This blog post is about wonky vision, some dangerously high blood pressure , two trips to 2 different ERs, my 53rd stint on a ventilator for asthma and another round of scarily debilitating ICU delirium. Essentially a bunch of Medical Bombs going off, one after another. What a fun way to start the week, eh?

Its well known that most people who have chronic lung disease usually have comorbidities, including diabetes, heart disease and Hypertension. Thankfully I don’t have diabetes (yet), but I do have uncontrolled hypertension. Up until a few days ago I knew my BP was high, but just assumed the medications Id been taking for it for the past 10 years, were doing their jobs and keeping my number under control. Well, that turns out not to be the case, as the events of last week will show. In this post, Im also revealing a lot about myself and my “other” conditions, by including some of my actual medical records, especially the Psych notes. I think it’s important for others to see, or relate if they have similar problems, just how tough it can be to live with a disease like severe chronic asthma. It’s not just the asthma, its all the other stuff that often goes a long for the ride.

Firstly, I take any medical condition that affects me, seriously. Im pretty good when it comes to doing the daily maintenance stuff, like taking my Blood Pressure measurements, Peak flows, Sats, sometimes more than once a day depending on how I feel. But the thing with blood pressures, is that you cant really tell that they’re high unless your numbers show it, or if you’re feeling stressed out or are having other symptoms. I learned that lesson last week when all of a sudden my vision got so blurry I couldn’t see 5 feet in front of me.

It was Wednesday afternoon and had we just driven up to Petsmart to buy some cat food and stuff. When I entered the building, I literally could not see the isle or shelves or anything on the shelves. I should note that I’m slightly near-sighted and I only need glasses if I’m driving. When I entered that store it was as if somebody turned up the near-sightedness knob on my eyes to full strength. I wasn’t dizzy, but the blurriness made me feel uneasy, so I left the store and my partner finished the shopping.

Back at the car I tried to collect my thoughts and recheck my vision by trying to look at everything , near and far. But no change, everything was still blurry. I figured this obviously wasn’t normal so I messaged my PCP. They called back(they usually text)and told me to go to the nearest Hospital right away to get checked out. The fear of course, is that I might have suffered a stroke. My vision was blurry bilaterally and I didn’t have any weakness or numbness to one side of the body, so I was pretty confident it wasn’t a stroke. Still, I heeded their advice and went to the closest ER.

The first thing they do when they triage you into the ER, is take your vital signs, including your Blood Pressure. The Nurse looked shocked when she took my my BP. The first one was 232/120 , the 2nd was 245/120. Though I didn’t have a stroke, I was certainly now at risk for one. During the 3 hours I was there they basically gave me some medicine (Hydralazine) to lower my BP. It took 3 doses of it to get it down to below 180, at which time they let me go home. So how does high blood pressure cause vision problems? Well, the same way it causes heart attacks and strokes… By either blocking or causing the blood vessels surrounding the affected organ to burst. And if you think about how tiny and thin some of the blood vessels in your eye ball are. Well, there you go.

Ok fine, I have to do a better job of controlling my BP. So as I’m ready to leave the ER and waiting for an Uber pickup, the 2nd bomb of the day explodes, literally and figuratively speaking. As Im walking fast a distance of maybe 100 feet towards the guy’s car, I feel my chest tighten up. As I get into the back seat of the car, I cant breath at all. I cant talk, I cant do anything. I couldn’t move any air. That little sprint or maybe the combination of having those extra BP meds on board, triggered some kind of bronchospasm, but I simply couldn’t breath. Being very embarrassed about my disease and not wanting to scare the driver off, I sat as calmly as I could, while taking 4 cloaked hits off my inhaler. I also had my Epipen unlocked just in case. Fortunately, my airways opened enough where I could move air again, albeit with an audible wheeze, and within 10 minutes I was feeling better. Phew, that was scary. Not because I clamped down so much, but how fast it happened. Ok, so 40 minutes later we finally make it to my house which sits on a hill. I get out of the car, walk up the hill about 25 feet to my driveway and the same damn thing happens again. I cant breath, my lungs just clamped closed again. But the this time the inhalers didn’t cut it and I had to use my Epipen ($110 worth of medication exploding into my thigh), but even then I still couldn’t catch my breath. I was this close to calling 911, when my partner came out on the porch and saw that I was struggling. It took another 3-5 minutes, but I was gradually starting to be able to breath again, though my heart was racing because of the Epinephrine. I thought to myself, what on earth could be causing this bronchospasm? When I left the ER I was breathing fine. Was it the walking fast up the hill that pushed me over the edge? I can’t be that out of shape. As an avid walker this has never happened before. It’s not like a just walked marathon.

Later that evening I blamed the bronchospasm on the BP medicine ( though dyspnea is not a known side effect of the med), and just the general stress of sitting in an ER for 3 hours wondering if you’re gonna go blind. Regardless of the cause, I should have known that these 2 bouts of sudden-onset chest tightness, were not just gonna disappear. Whatever the trigger, this was just the beginning of a more prolonged flare. But with the blood pressure and the vision thing going on simultaneously I got side-tracked and didn’t address, or take the asthma component serious enough. It happens. I’m human, its difficult to juggle several medical problems at the same time.

Moving on with this shit show, it’s now Thursday and I have an important appointment with a retinal specialist in Berkeley later this afternoon to see what’s going on with my eyes. Not just because of the sudden visual disturbances I was having the day before, but for similar problems that date back 5 years. A major portion of my vision is missing in my right eye and Id like to know the heck why. The other problem however, is that my lungs are still reeling from last night’s mini attacks. So much so, that Ive now started myself on 60 mg of prednisone, plus am doing neb treatments about every 2 hours to stay afloat. Asthma flare or not, I was determined not to miss the appt. The back up plan, if my breathing got worse, was to first head over to Berkeley for the Eye appt and then drive over to UCSF ER in San Francisco to treat my asthma. I figured if things went south with my lungs while at the Eye Clinic, I could always be temporarily treated at the Urgent Care center which is located in the same building. Well the Eye tests and scans took a lot longer than I thought they would and my chest was getting tighter by the minute, so I told the Opthamologist Id finish the tests on another day. 30 minutes later we arrived in SF where Doug dropped me off in front of the UCSF Emergency Dept. He would have come in with me, but we’re still dealing with some strict Covid safety measures here, so no visitors allowed.

So they triaged me quickly to the #2 resuscitation room, which I’ve been in a jillion times. After that, all I remember is waking up in a delirious state, not knowing where I was was. How was I to know that the 3rd Bomb of the week had just gone off.

View from my bed in the ER. The only picture I was lucid enough to take during this stay. The new monitors display all of your vital signs, meds and lab-work results. Pretty cool.

It would be another 7 days in the ICU before I finally pieced together what actually happened while in the hospital. Most of it is explained in the Physician’s progress reports. Here are some of those Medical notes in chronological order:

ER Admission Notes .
ICU Admission Notes
Otolaryngology Notes
Intubation Notes
Post Intubation Notes
Post Extubation Notes days 1-2
Post Extubation/Delirium Notes day 3
Post Extubation Notes days 4-5
Hospital Discharge Summary

For those who dont want to decipher all the medical jargon, in a nutshell my asthma got real bad, I failed 20 hours of Cont nebs and Bipap and finally had to be intubated for a couple of days. My BP went from too high to too low. My vision went from abnormal to normal again and my brain couldn’t take all the excitement, so it hid from itself for a few days. Then I got all better and went home.

As has been the case so many times now, I woke up in a very delirious state (the 3rd Bomb) while still intubated and had to be restrained both physically and chemically. Per Douglas and the Doctors and Nurses involved in my care, after extubation my breathing improved, but my delirium got worse. I was having horrible and vivid nightmares. I was paranoid and hearing voices. I was afraid to fall asleep for fear of reliving the same delusions over and over again. It was awful. It got so bad that they sent in both a Psychiatrist and Psychologist to assure me that there was nothing wrong with me and that the mental funk I was experiencing would pass. I think it was on day 6 that I finally rejoined reality and got my senses back. I woke up and felt totally normal. The delusions and paranoia were completely gone. I knew that what I was experiencing earlier which just delusions. Very believable one, but still just dilutions. Here are the Psych Notes from those visits

I still don’t know what caused the asthma exacerbation that led up to Intubation #53, but I know little more about what happened to my vision and I know for sure that I have to control my BP better. As far as my vision goes, I probably had a stroke in my right eye several years ago that left blind spots in my vision, That mini stroke if you will , was undoubtedly caused by a high blood pressure event that occurred while I was in the ICU for asthma back in 2016. At that time I had experienced an episode of total blindness, which lasted about 15 minutes. All I could see was bright white light. An eye specialist was called in, but they couldn’t find anything on exam, so they chocked it up as a brief Hypertensive Encephalopathic event. After that happened, I adapted and basically forgot about it. Well, probably the same thing happened last week triggered my vision blurriness ….. It was the damn High blood pressure.

On that note, monitoring and managing ones hypertension becomes even more important when you suffer from severe lung disease, because MOST if not ALL of the medications used to treat asthma or COPD, can cause an increase in Blood Pressure, especially Prednisone. If you’re on prednisone its critical that you check your BP often and treat it if needed. If not, you could potentially loose you’re eyesight, have a stroke or heart attack.

And finally my take on the Psychological impact of all this. 60+ years of breathlessness, frequent hospitalizations and seemingly never-ending stints on life-support, has changed something in my brain. Don’t get me wrong, I’m thankful to be alive, but what a price I have to pay for it. I find it so ironic that in addition to my prednisone intolerance, Im also allergic to Intensive Care Units and Ventilators—all of which seems to cause psychoses.

Continuing on our Bomb theme, like a person who has suffered “Shell shock”, living with a chronic medical condition that’s constantly knocking you down, Im sure can cause the same kind of PTSD— sometimes you’re not even aware of if. I think a lot of my ICU induced delirium is a result of living in a constant battle field.

The good news is, its been 3 days since I’ve left the Hospital, and so far, no more explosions have taken place. Hopefully my body is running low on ammo or has developed better defenses.

If you need help, help is available. PTSD and the other bombs I’ve talked about are very common in people living with serious health conditions, and treatment for it is getting better all the time.

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6 thoughts on “Its been a week of Bombs going off, one after another.

  1. Anita Richards says:

    A Warrior in every sense

    1. Thank you. Im guessing you have lung issues as well?

  2. Lizzie says:

    thank you so much for sharing. I am so in awe of your ability to be open and share your journey in such detail, As a medical dr in the uk – PCP (with severe asthma) i have found it facinating to see how things are done in the US in terms of medical documentation – I have take some useful points to think about improving practice here.

    What I really applaud you for is your openess about the vulnerability you have felt, and sharing about the psychosis. I have had steriod induced psychosis in the past, and it’s so scary. Being that unwell for anyone *once* in a lifetime is so traumatic, and yet we have gone through multiple times. Yes you’re a warrior and you’ve been through it before, but you’re still human. Too many try to use defence mechanisms to deny these feelings, and you have shared them with the world via the internet. Never underestimate how amazing that is, and the positive impact you will have on others by sharing. You are amazing, your life is important. None of that must have been easy to read (we don’t get access to our notes in the UK – only a brief discharge summary), but you’ve also written about it- wow.
    One day at a time – keep trucking 🙂

    1. Hello and thank you for taking time to write such a kind letter. Im sorry to hear that you suffer from severe asthma.

      I was afraid this post would turn too many people off or that few would be able to relate to it.
      I was telling one of my doctors yesterday, that delirium has added a brand new dimension to my asthma. Now, on top of everything else, when I need emergency treatment for my asthma, I can look forward to going crazy for a few days as well. What a fun way to live….eh? Fortunately, I have a wonderful Psychologist who is helping me with my PTSD.

      I too am very curious about the differences in asthma care in the US and the UK. I have lots of asthma friends who live in the UK and Ive noticed that when they get sick , they tend to me in Hospital much longer than my friends in the states, myself included. I ve also noticed that infused terbutaline or aminophylline is a popular treatment there, where here you rarely see it.
      And lastly, the cost. You are very lucky to have the NHS . Here, medical care and medications for asthma (and everything else) is very expensive. And though many people have insurance, the deductibles and co pays can be very high. Here’s the actual bill for the hospitalization above. Thankfully, I have both Medicare and private insurance to cover the costs or Id be living in the streets.

      Thanks again for leaving your thoughts and I sincerely hope that your asthma is behaving at the moment,.

      Xx Steve

      1. Lizzie says:

        Oh.My.Goodness – that bill! I am so shocked, even though I ‘know’ that is the reality in the US. It’s funny isn’t it, because there’s a big ongoing campaign from Asthma UK to scrap prescription charges for medication for asthmatics (certain medical conditions are totally exempt, such as diabetes. Everyone else who isn’t on state benefits 18-60 has to pay £10 per item. This is for outpatient precriptons. You can get a pre=pay card for unlimited meds for £11/month. So I do get why there’s some resentment to the charge for asthmatics (parity etc, but it’ll be because there are so many more asthmatics that the NHS can’t afford it), and I can afford it… but when people complain, I do want to point out how they get everything else free and £10 is nothing compared to even cheap co-pays in the US.

        I love that you’ve talked about the delerium/psychosis/PTSD stuff, I really do. There’s so much stigma around mental health (and severe physical health probs) that things are only going to change if people are more open about their struggles. I really worry about being seen as ‘mad’ or ‘anxious’ when acutely unwell, and have always had an irrational fear that this will lead me to being discharged from the ED too soon, and then take a turn for the worst. There’s so many factors that can cause a psychotic and delirious state in acute severe asthma too; and yes I think it’s a double-whammy of how it ends up so traumatic afterwards. I’m reflecting on the fact that you having access to your notes in the way that you’ve referenced them above is actually really useful. Whilst it’s clearly very hard seeing in black and white what went on (and you will have the same problem that i’ve got of being able to understand the numbers and jargon…. I remember thinking “oh s*** my lactate’s 7 on a recent admission) it is definitely a useful tool to process it. I’m often left trying to unpick in my head what actually happened and when after an admission, and then it gets very jumbled and really adds to the trauma.

        I’m glad you have a decent psychologist – i’ve generally found them helpful too – although again, i struggle with ‘I’m seeing the psychologist, maybe i’m just crazy!’. My husband is also a psychiatrist which is very useful; and has previously had to step in and point out to the medics that they need to be careful – steriod induced psychosis is a ‘thing’!

        I think it’s also worth pointing out how hard this is for you (us) because the PTSD can’t easily be totally packaged up as a ‘one off, this will never happen again’ thing (like with a lot of life-threatening traumatic events that lead to PTSD), because in reality it probably will… we’re always just on that wondering when it could happen again/will it be the same?/worse? mental hole!

        Thanks for your kind words; even as doctor I am still suprised at how severe my disease is compared to others, and can end up feeling a bit of a freak – so it’s nice to connect with people on similar journies. I am sat here reading some of your blog posts (been an on and off reader for years) as i’m currently in bed at home trying to keep my current grumbling exacerbation at bay (my birthday and brother’s wedding tomorrow so do not want admission, at least in the next 24hrs!!)

        Lizzie x

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