#97 , misinformation and a virus from Hell

Battle scars: 4 failed arterial line attempts and 12 failed IV attempts. I have no veins left and my radial arteries are so scarred up from previous insertions, that it’s virtually impossible to get access unless they put a central line in. Very frustrating for the doctors and very painful for me.

I’d been having vague flu like symptoms, such as stomach bloating and chills for about a week before my lungs started to act up. Less than 3 weeks earlier I had received the H1H1 vaccine as well as the regular annual flu shot, so the last thing on my mind is that I might actually be coming down with the flu.

By New Years Eve afternoon my peak flows started to trend downward, and by that evening they had dropped from 340 to 200. My sats fell from 97 to 89%. I was requiring neb treatments almost every hour and had considered going to the ER right then and there, but had decided against it because of it being New Years eve and all. I figured the hospitals would be jammed with New Years revelers , so I decided I would just try to tough it out till morning and then re-assess. Maybe by then I would feel better. After a horribly breathless and sleepless night spent next to the nebulizer machine, I figured I had had enough, bit the bullet and went to the ER.

As is usual for me, rather than being carted in or delivered by ambulance, I strolled into ER on foot. I told the triage Nurse what the problem was. She took down my name and asked if I was in serious distress at the moment ( since I never really look sick) , I said I was OK at the moment . She had me take a seat in the waiting room ( which by the way, was pretty much emptied at 11am). 5 minutes had past, then 10 minutes, and 30 , and still they had not called me in. By now it had been almost an hour since I had a breathing treatment and I was really starting to close up. I hate making a scene , but I thought I was going to pass out, so I stood up and walked back over the triage window. The Nurse took one look at me and said ” OH MY GOD .. You haven’t been seen yet??? I said no, and I think I’m going to pass out. Within 30 seconds I was on a gurney on my way to the resuscitation room . I didn’t actually pass out, but I sure prompted a lot of people into action. Before I knew it, I was on a continuous albuterol neb with people whirling around me trying to get IVs in. They asked the usual questions.. Have you ever been intubated? Before I could answer, one of the ER doctors recognized me and said “He’s a bad one….he’s been intubated a dozen times”
Within a record 30 minutes, the ICU team had completed their evaluation and I was on my way to the unit.

In the ICU they put me on the usual Bipap setting of 12/5 with 15mg/hr of Albuterol piped in. Because of my flu symptoms, they swabbed my nose with the rapid flu test, put me on droplet precautions and placed me in isolation, which means anyone coming in contact with me had to wear a mask and eye shields. Im sure the staff weren’t too please about that ( I know from personal experience what a pain it can be to work with a patient who is in isolation, especially a ventilator patient.)

For the first few hours, the bipap seemed like it was helping, my Sats had increased to 98% with an FIO2 of just 40%. Although I was saturating well, I was starting to feel that all familiar ache that I feel when my CO2 starts to climb. After several unsuccessful attempts at placing an Arterial-line ( which hurt like hell), they finally gave up and resorted to doing individual ABG draws.

(My Hannibal Lecter look before Intubation)

I had now been on bipap for about 4 hours and my PCo2 was starting to climb. The first PCO2 came back at 43, but I was on bipap and my resp rate was in 50s ( this is not a good sign). An hour later my PCO2 was 60. A half hour after that, it was 66 and my Ph 7.29 . It was time for the intubation talk. Rather than himming and hawing about how long to wait, this time I told them straight up, just intubate when you think Ive had enough. They agreed, and 30 minutes later it was lights out for me. 14 hours later I woke up with a tube down my windpipe.

Just a few hours later I was extubated and talking up a storm …or should I say cuzzing up a storm. Why was I not kept down longer? Why didn’t they use propofol to sedate me. Why were the RTs being so rude to me this time?

The anesthesiologist had promised me that they were going to use propofol and keep me asleep for at least 48 hours, but it turns out that I had the same weird reaction to propofol as I did during the previous intubation. Something called “infusion syndrome“,so they had to stop giving it to me. They thought it was strange, because propofol infusion syndrome usually occurs in people who are sedated for several days.
For that reason they had to use Versed and Fentanyl instead of propofol to keep me sedated, making it much harder to keep me asleep. At one point I actually remember walking up “paralyzed” and unable to move or communicate. Apparently they had not sedated me enough and I woke up before the paralytic agent (a drug they use when they insert the tube) wore off. Talk about a horrible experience. Nothing like being a zombie. In total, I was on the ventilator for less than 2 days.

After being extubated the RT gave me the choice of using the continuous neb or the bipap…. of course I chose the neb. I did Ok for about an hour , but then once again ,my PCO2 started to climb. Not happy with my recent ABGs, the RT comes into the room accusing me of causing this spike in my CO2, because of not following her instructions of using the bipap. WHAT THE F!
Since when is the patient suppose to decide what type of therapy he gets? Even an RT/ patient deserves someone else to call the shots when he’s sick. I didn’t like her attitude and I told her. The next thing I know, she sends in her supervisor who starts patronizing me. He says to me…” your Ph is 7.30 and your CO2 is climbing again. If you want , I can help you correct it. If you’re not willing to help,then there’s nothing I can do for you. WHAT THE F AGAIN? What’s with the all the attitude. Evey one was nice to me before I got exubated. What did I do?

I was so pissed off I wanted to scream, but I figured that they would treat me better if I did what they wanted. So I just sucked it up and did what they asked. The male RT set me up on what they call “non-Invasive” ventilation. It’s basically where they hook you up to a ventilator with a mask instead of an endotracheal tube. Its just a fancy way to give Bipap. He also encouraged me to play with the ventilator settings , so that I could adjust it the way I wanted. ( Remember, I’m an RT. I know how to operate ventilators). At this point I couldn’t figure out if he was making fun of me, or if he appreciated the fact that I was trying to play ball with him and cooperate. In any case, his act of showing a little kindness paid off, and within a short time my ABGs were stabilized and everyone was happy, including myself.

12 hours later I was strong enough to breath on my own and they were able to discontinue the breathing machine entirely. So, what was up with all the attitude they were directing my way? ( more about that later)

( Here’s me after coming off the Ventilator. What a difference huh?)

I have now been in the hospital for 3 days, been on and off the ventilator, and was starting to breath a little better. The Rapid flu antigen test came back negative, but because the test is only 50% accurate, they decided to do the more sensitive test for swine flu. That test takes 6 days and had to be send the to state for processing. What this basically meant, is that even if the test was negative, I would be spending the rest of my hospital stay in isolation. I really didn’t mind because it assured me a private room my entire hospital stay.

On Day 4 I was deemed stable enough to be transferred to the step down unit, where I stayed until my discharge 3 days later. While there , I was placed back on a continuous albuterol neb, but this time the dose was decreased to 5 mg per hour.I did fine on that , but began coughing much more than I usually do. My biggest complaint was the congested nose and the unrelenting chills from whatever virus I had. Eventually , my chest became congested as well. I was able to cough up some gunk , which they analyzed in the lab. Seems on top of this virus from hell, I also had a bacterial infection brewing and now had bronchitis. The next morning they started me on Doxycycline and decided to keep me in the hospital an extra day. On Friday I still felt like crap, but was home sick and convinced them that I felt well enough to go home.

I am not an anxious person, unless I’m suffocating to death. I can see now though, that my requests for painkillers to make my breathing easier, would probably account for why some of the doctors were acting weird around me. On more than one occasion, I has some of the doctors trying to convince me that I should try some long acting anti depressants and/or anti -anxiety meds, instead of opiates to manage my dyspnea. They also gave me a list of referral to various specialists who supposedly deal with dyspnea management ( all of whom, Id seen in the past without success). I reminded her, that I was taking opiates on the recommendation of one of UCSFs own highly acclaimed palliative care doctors.
In the end, I basically told her that we had been down this road many times before, and I that I refuse to discuss the matter any further. It’s my life, and if I choose to take opiates during bouts of severe breathlessness, that’s my choice, and it should in no way, change how I am treated during an active severe asthma exacerbation. Case closed!

Dont get me wrong, I’m grateful, and for the most part , satisfied with the medical care I received during this hospital stay. There were a lot of good things that happened as well. For example, for the first time ever, the doctors actually granted my request to not exceed 60 mg per day of Solumedrol or prednisone, which really helped.

Bottom line…Much like a credit report, incorrect statements or diagnosis that end up in your chart , can have a negative effect on the type of medical care you receive for years to come. I think this is especially true when it comes to medically complex patients (such as severe asthmatics.) A lot of this misinformation could be avoided if physicians were allowed to follow their patients in the hospital. Of course, that’s not likely to happen.

On asthma severity scale of 1-10, this probably only ranks a 6 or 7, though having the flu at the same made it feel like a 10. Number 97 is behind me now, but I still have a long recovery ahead. It will take me weeks to regain the strength I lost in just one week of illness. As Ive said before, the aftermath of a severe asthma exacerbation is often more difficult to deal with than the actual attack itself.
It often takes several days after the hospitalization before you start feeling the trauma of what your body has been through. Being jabbed dozens of time with needles and catheters. Lack of sleep, sensory overload, having a hose shoved down your windpipe, being place on artificial life support. And then of course , there’s all those potent drugs. All these catch up with you. Yes, the recovery is often the worse than the treatment.

If there are any bright spots to this other wise crappy week, it would be the wonderful Nurses I encountered in both the ICU and Step down units who have taken care of me many times. They are angels.

And finally, a special thank you and hug for Kerri and Dr Wenzel who took the time to check up on me everyday while I was in the hospital via telephone. Dr Wenzel recommended that they do a PFT on me for discharging me,..and they actually did it! Now, that’s what I call clout!

PS…In all fairness, the RTs in question were new to me . I had never worked with them before. Maybe they weren’t aware of my little quirks, but it still doesn’t give them the right to treat me like a 2 year old. As far as some of the physicians concerns, I suppose they were justified, I just wish they would talk to me before rushing to conclusions.

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27 Comments

  1. sophie says:

    hey dude, glad you made it through. I so know how you feel being a multiple ventolated patient myself. I have heaps of problems with my treatment in hospital. To the degree where i refuse to go unless …….unless i get to the point of compleat exhaustion. I too have had exsperience of being paralysed and yet aware due to bad sedation. Its deeply effected me but im glad to see you sounding so optomistic. Thanks for being so bold to post the pics and the video…….I so know how you felt and feel now….have had a pretty bad week myself, i ended up swollowing 100mgs of prednisone to try and stop myself from being admitted. not that i recommend this……..you sound whey more ballanced than me about all of this that we go through…..

    Go easy, sending you my warmest best wishes….your lucky huh to have Dr Wenzel on your side……i have chased her for advice and shes been wonderful….thank you ;)

    Soph

    • Stephen says:

      Hi and thanks. Sorry that you’re having a bad breathing week too. I can’t imagine taking 100 mg of prednisone. I d rather shoot myself. I was lucky this time, the max pred I was on was only 60 mgs. Im already down to 30.

  2. kerri says:

    Hey Steve,
    I remember you telling me a lot of this stuff, but now all the pieces are kind of together for me. Wow. Wicked battle wounds . . . ouchhh.

    Even from way over here, I am not impressed with those attitude-much medical people. Like, obviously if you're in the hospital you're already feeling crappy enough, they don't have to make things worse for you!

    Hugs for your recovery, Steve. And hoping that you don't have to head back to the hospital for a LONG TIME.

    PS. Here I go again with the colours [like I was when you posted those pics of your shoes].
    So . . . was it intentional that your blue shirt almost matches your eyes? And that nurse's hoodie is an awesome colour!

  3. marsh says:

    your lookin good try not to get the meanies???? hang in and know i'm thinkin of you

  4. rtscribe says:

    Thanks for this post. As an RT student, who hasn't yet had much of an exposure to actual patients, you have once again provided me with a valuable insight into what it's like to be a patient.

    I hope you get better soon.

    • Stephen says:

      Hey Thanks for taking the time to respond. As an RT myself, I know how awkward it can be for other RTs to deal with me. I just hate it when my professional title dictates the kind of care I get as a patient. Sometimes excellent, sometimes crappy.

      If I could give two pieces of advice to a new RT grad it would be, Be careful what you say in front of your ventilator patients. They can often hear every word you say. Secondly. Don’t assume that all respiratory patients fit the same mold. Keep an open mind and try to put yourself in their shoes.

      Good luck on your career, I hope it’s an amazing one!

  5. Fran says:

    sorry to hear about the incarceration again. Hope you're doing better.

  6. Olive says:

    hey steve, those battle scars look bad. I know the feeling well. do you find your arteries are so scarred now the needle bounces and slips when they try to puncture it for a gas??? Also your bipap masks are so different from ours. I guess it does the same job. will try and find a photo of our bipap masks.

    that was rough treatment the rt gave you. i would get really upset by that. I know when i went out with friends once i hadnt had anythign to drink but my friends had so the nurses when i took an asthma attack assumed i was drinking because they were and they treated me so badly.

    anyway take care and hope the rest of the year is smoother than the start has been,

    Olive x

  7. Danielle says:

    Hi Steve. Sorry you've been so sick. I know this recovery is going to be tough. I'm thinking about you and hope to see you back to your old tricks SOON.

    If there's one thing that gets me angry, it's when med professionals get patronizing with their patients. Rudeness is even more inexcusable… blech! It sounds like a lot of it was sheer misinformation, but that doesn't give anybody the right to be rude. Thanks for posting this though, it helps me gain insight for the day when I hopefully become a doctor.

    Take it easy Steve. You can do it!

    • Stephen says:

      Thanks Danielle. I almost forgot that you’re going to be a Doctor. Hopefully a Pulmonlogist ( Respirologist). I’m almost certain that your experience in dealing with your own asthma will make you a much better doctor.
      (Make sure you do your first marathon before you go to medical school :-)

  8. marsh says:

    they just said that it's another red day here????? and in same breath they said salt lake has the worst air aaaarh i wish i was frog it might be easier to breath??? hope your feelin better marsh

  9. Cris says:

    I don't know how you do it; how you keep going time after time. It's amazing! I don't think I'd have the strength. I know a lot of people must say that, but when it's coming from me, you can take it as gospel: you've got a source of endurance few people have been blessed with. Keep on truckin'!

  10. RTStudentPA says:

    Hello,
    Hi I am a respiratory therapy student in PA. I am on my second clinical rotation right now and am almost done with 6 months left in the program. My question would be were you on PEP/FV therapy after being extubated. It would seem with your secretions they would of wanted you to be coughing some of that stuff up?

    • Hi, Thanks for the question. Yup, PEP or FV probably would have been helpful, but no, they didn’t order it. I think because my CXR was clear and I was able to cough most of the junk on my own , they either didn’t feel the need or just forgot..who knows? Very seldom in my career have I ever seen PEP ordered on an asthmatics.
      Good luck on your career!

      • RTStudentPA says:

        I know that at the hospital that i am attending for clinicals it seems as though everyone was on FV. I have seen the wonders of that therapy first hand. It is interesting to see how some pts. respond while others just look at you like you are from the third planet or something. I like the critical care side of medicine it is just more intense and scary as the semester gets going. Where did you attend school at?

        • Yeah, I agree, Ive seen PEP and FV work wonders, especially in post -op ( abd or thoracic surgeries). I liked critical care a lot too. Spent my last 6 working years working in an adult ICU. I went to a private RT school way back in the 70’s and on to the University of Miami, in S Florida. I got my college degree, but didnt take the registry exam until the 90’s. ( When I went to school they were still doing live RRT exams ( oral boards) Not like today with clinical sims.

          • Btw….are you anywhere near the University of Pitt hospitals? I visited there in November as a research guinea pig for a severe asthma study. They have a great severe asthma research program there.

  11. RTStudentPA says:

    No i am in northwestern pa. I attend classes at Gannon University. I have a facebook account but not sure how to get the information to you through this website?

  12. Liam says:

    I have all ways wondered what is it like being awake and on a ventilator. Surely the instinct is to breath for you self or fight it.

    The fact that your hole trachea is blocked with a pipe must be a horrendous experience or at least looks like it.

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