1. The comedy of errors continues. I -think- I’m about to head to the hospital for a level 3 cpet. Got a voicemail from the hospital about my COVID-19 test results. Called back and got voicemail. https://twitter.com/keikoinboston/status/1239352630968815617

2. I was told yesterday to come to the hospital whether my results were in or not so unless they call me back in the next few minutes and tell me I have COVID-19, I guess I’m going.

If I have time, will update the thread throughout the afternoon.

3. Update: Got a call back while driving to the hospital. My COVID-19 test is negative. Woo!

4. I’ve been here for 15 mins and no one knows what is going on. They wanted to place the catheter but I was told I need to do some pulmonary tests before it goes in so now they’re trying to figure out what’s supposed to happen first.

5. I wasn’t allowed to eat or drink anything (except some water with my morning medications) so I’m really dehydrated. Finally had to ask for some water because my mouth is so dry. Tech offered me ice chips.

6. The doctor finally showed up and it turns out I was right. I need to go have some pulmonary function tests first and then come back for the catheter. They’re still with another patient so I have to hang out here for now. They took my vitals, put in an IV & drew some blood.

7. Not sure how long before the pulmonary function lab will be ready for me.

L: This autobio graphic novel was written by a friend of a friend. I found it in a free box on a sidewalk in Brookline couple months ago!

R: crochet project
https://www.amazon.com/Kiddo-National-Book-Award-Finalist/dp/0545902487

8. I have food allergies so if I have a problem during the test and need food, I can’t be sure they’ll have something I can eat. I brought a protein shake and snacks just in case and will probably need to have them before I head back to my car.

9. Things are happening!

First: spyrometry. There’s nothing like medical tests to strip you if any vanity.

10. Just signed consent form. Going for cardiac catheter and arterial line placement next. Normally they sedate patients for this but because I have to ride an exercise bike next they will only be using lidocaine.

11. Oof. Finally in recovery. That was a grueling 3 hours but it’s finally done. Have more pics to share but need to hydrate and have snacks.

12. When I was in the cardiac cath lab the pulmonologist running my test said that in all the years he’s been doing level 3 CPETs he’s never not been able to make a diagnosis. So fingers crossed. It may take 2-3 weeks to write the report because there’s so much data to review.

13. Also found out that for now they’re calling in the patients who’ve been waiting the longest. So the other patient they saw today and I have been waiting since February.

14. Gah - noticed one of my pressure dressings was peeling off. called hospital and fellow said that as long as it’s not bleeding I can just tape it. Used kinesiotapeand it’s secure again.

15. Difficult to use right hand. They actually told me to treat my right arm like it’s broken. By which they mean no heavy lifting, no bending the wrist, no putting pressure on the hand. Will see how it is tomorrow but might not be typing for a few days.

16. Update:

Welp, the aftermath has been much worse than expected.

I'm often unwell after medical tests but usually it’s mostly high pain and fatigue but I can lie in bed and watch tv and be on Twitter.

17. I fell asleep last night without even having my protein shakes and more water, slept for 10 hours straight, woke up this morning and was up from 9:30am to 12:30.

Had trouble keeping my eyes open and and was in and out of sleep until 6pm. Did manage to eat lunch.

18. Crashed for another 3+ hours but I kept being woken up by fireworks. Never got fully conscious though.

19. I was allowed to shower at 6pm (24 hours after pressure dressings went on) but I was asleep. Not that I was capable of standing or washing my hair at that point. Still not sure a shower is happening today but I’m itchy so it should.

20. I should probably eat dinner but it’s been an hour since I last woke up and so far being upright is not happening.

21. I think most of the pain is from the IV, arterial line, and cardiac cath which went through my neck. It’s been hurting to swallow, turn my head, cough/sneeze, and laugh very hard.

22. I found out that laughing hard was not good when I was on the phone with a friend. Her daughter came in to inform her that there was a chicken upstairs and she was being haunted by a poultrygeist.

23. Glad I pushed to get laundry and grocery shopping done earlier this week. I wondered if I was doing too much but this is why I prep for not being able to get out of bed for a week. If I’d had more time I would have done more but they gave me 2 days notice.

24. Update: Decided to take the Coban bandage off the IV site at 10:40pm because it was so uncomfortable. I had planned to wait until I showered but I was too tired to shower. The redness has gone down.

25. Finally (literally) ripped the 2 pressure bandages off my wrist and neck. It would have been easier in the shower but I was itchy and didn’t want to wait. My neck looks a bit like I’ve been attacked by a vampire.

26. Just left a voicemail for my chiropractor’s office cancelling my Monday appointment. My neck is pretty bruised and I definitely don’t want to be prodded more until it heals.

27. It’s been almost 3 weeks since my level 3 CPET. Report is not done yet but thought I’d post the pics I was too tired to post. If you squeamish, don’t continue reading.

28. When they were finally ready for me after my spyrometry, I was taken to the cardiac cath lab. This machine is a C-arm - an X-ray used to help them place the cardiac catheter in the right side of my heart. They also used an ultrasound.

https://avantehs.com/p/ge-innova-2100-cath-angio-system/13788

29. Tray of tools for right heart catheterization and radial arterial line placement.

30. It took about an hour from the time I walked into the lab until we were ready to go back down to the pulmonary function lab. For most of that time I was lying on the table with my head turned to the left and a surgical drape over my neck.

31. I couldn’t see everyone in the room but I think there were 5-6 people - my doctor, his fellow, 2 nurses, and 1-2 techs?

32. One thing that I completely forgot about until I was driving to the hospital is that I had surgery on the right side of my neck when I was 3. I had an infected lymph node that became an abscess that had to be drained.

33. I have scar tissue in my neck which has resulted in torticollis that causes me alignment issues. I wondered if the scar tissue might interfere with their ability to go in through the right side of my neck, which was the plan.

https://en.wikipedia.org/wiki/Torticollis

34. They assured me that even if there was a problem they would just go in elsewhere but once they imaged my neck they said that the childhood surgery hadn’t affected any of my blood vessels and they would go in through the right side as planned.

35. I had previously had some confusion with staff telling me that I wouldn’t be able to drive myself because people who undergo cardiac catheterization are usually sedated.

That turned out not to be the case. They said some hospitals don’t even offer sedation anymore.

36. Some people elect to do it without sedation so they usually only end up needing it if a person is too anxious to get through the procedure without it.

I was told they numbed my neck and my wrist with lidocaine. The injection hurts but it wasn’t even the worst pain!

37. The worst pain was actually removing the tape from the surgical drapes! My doctor joked about it as they were trying to get the drape off my neck.

38. Although I’d worn a headband (which they thanked me for) some of the tape had adhered to my head hair. I hadn’t gotten a haircut since before the pandemic and the hairs at the nape of my neck are overgrown and hadn’t thought to trim them back.

39. The placement of the cardiac catheter and the radial arterial line weren’t comfortable but the tape removal really was the worst pain throughout that hour.

40. Once they got me free of the surgical drapes, they got a wheelchair and had me transition very, very carefully from the table to the chair. This is the radial arterial line and all the tubes I was hooked up to.

41. Cardiac catheter also hooked up to monitoring equipment. They had me on a monitor during the procedure and took some initial readings at rest. Then they hooked me up to a travel monitor for the ride downstairs.

42. I forgot to say that while I was in the cardiac cath lab I was masked the entire time except when they had to put nasal cannula in my nostrils to monitor and also in case I needed supplemental oxygen (which I didn’t end up needing).

43. I also forgot to mention that since we were in a room with an X-ray, everyone who was in the room with me wore a lead vest and smock. No smock for me because radiation level is low but they must wear them because they’re exposed to the radiation all the time.

44. I found out after we were done when my doctor came around the table to talk to me that he was wearing a matching set with purple flames! I wish I had a picture of this but I don’t.

45. The nurse told me what this is called but I’ve forgotten.

46. When we were finally ready to go the nurses wheeled me down to the pulmonary function lab. That’s when the real fun began.

47. Getting everything set up for the exercise portion of a level 3 CPET is a pretty big production. They had to switch me from the travel monitor to a monitor in the pulmonary function lab and get me hooked up to all this.

48. They had a tray of syringes set up to do up to 11 ABGs (arterial blood gas).

Fortunately, that’s part of that the arterial line is for - this was not taken directly from my arm but via the equipment.

https://www.webmd.com/lung/arterial-blood-gas-test

49. There were 6 people in the room w/ me - my doctor, his fellow, the 2 nurses, the pulmonary function lab supervisor, & a respiratory therapist who was there mostly to observe but helped out by handing over the syringes to the nurses. CPETs are a total clown car experience.

50. Once they got everything mostly set up they had me get on the exercise bike. I didn’t want to bother anyone to take a photo of me but here’s my view and a selfie. My surgical mask was swapped for this mask which was hooked up to more monitoring equipment.

51. Ooh, I just realized I had a photo of the exercise bike and another monitor from last year’s CPET. Room was rearranged but the bike was the same. This was hooked up to electrodes attached to my back.

52. And then, I cycled. They actually offered to put on music so I went with 90s. They told me that a another patient had managed to match the beat so well they were joking about SoulCycle. This was definitely far less glamorous.

53. I’m not sure how long I lasted before my body went into “fuck you” mode but it wasn’t long. From the timestamps on my photos between the mask selfie and one that I took while lying on the stretcher in the room after I was done was just under 30 minutes.

54. The test was even more chaotic than last time because they were trying to get numbers from the monitor and it was malfunctioning.

So in my left ear I had the pulmonary function lab supervisor yelling “KEEPGOINGKEEPGOINGKEEPGOINGKEEPGOING!!!”

55. While in my right ear the monitor’s alarm was going off and the nurses were trying to figure out what the heck was going on while my doctor, who was standing in front of me was talking to them. It was total chaos.

56. My biggest fear about having the test was that I might not last long enough for them to collect what they needed and when I heard the monitor’s alarm going off I was wondering if they were going to tell me I had to come back and do it all over again.

57. But once we were done they said that the numbers from the monitor were to double and triple check things and that I had lasted long enough and hit the anaerobic threshold needed to get the data. Phew!

Me at 5:11pm. I had been there since noon.

58. I had thought we were going back to the cardiac cath lab but they actually removed the catheter and the radial arterial line in the pulmonary function lab. I was unmasked after they took the blue mask off until we were ready to go.

59. They gave me some water. My mouth was so dry at that point. Other than the ice chips they’d given me while waiting I hadn’t had anything to eat or drink since the night before. This is because there’s a risk of throwing up so they want you to have an empty stomach.

60. I could barely think at that point but I heard them talking and it seemed that the equipment malfunction was due to the fact that the pulmonary function lab’s ambient temperature was so high that it was close to my body temp and it couldn’t do a differential.

61. I didn’t entirely understand this but was too tired to ask questions. All I needed to know what that they had everything they needed. In the end they got only 7 ABGs but they said that was fine.

62. My initial set of labs were available online when I got back from the hospital and it seems I still have hypokalemia (low potassium) which showed up in my labs before the pandemic. I hadn’t gotten around to talking to doctors about it but I think it’s medication-induced.

63. The ABGs came back later. I was a bit confused that they ran both Non-African American and African American GFRs but a friend who is a healthcare provider told me that’s standard. This measures kidney function.

https://en.wikipedia.org/wiki/Glomerular_filtration_rate

64. I couldn’t make sense of the results but did see that I’m way outside the reference range on some things which I’m hoping will mean something useful to the doctors. They have so much data to go through.

65. After I’d recovered a bit on the stretcher in the pulmonary function lab they put me back in the wheelchair to head up to recovery. I finally had a chance to ask the nurses how things had been going with the pandemic.

66. They said that they’d had an initial week or so where things were really quiet but they had to remain open for emergencies and people whose care could not be put off (ie: anyone who has had a transplant). So they said they were pretty busy throughout.

67. But they expressed sorrow about the number of at home deaths going up and people being too afraid to come in when they were having milder symptoms. They said a lot of those lives could probably have been saved.

68. They seemed confident in the hospital and said that the safest place to be for a lot of these patients was the hospital.

69. Additional photos and tweets from when I got to recovery and the rest of the night start upthread. https://twitter.com/keikoinboston/status/1278808369940365312

70. I think I was in recovery for about an hour before they felt like it was okay to let me go but I hadn’t even had the protein shake that I’d brought with me or a snack because I’d been slowly drinking the water and ginger ale they gave me. So I stayed a bit longer.

71. They asked if I felt okay to walk and I did but they insisted on having 2 techs accompany me all the way to the parking garage. They left me at the elevator.

72. I somewhat regretted my decision to drive myself when I was in recovery. The friend who had been on standby to take me offered to come get me but he doesn’t live nearby and then we’d have to figure out what to do with my car so I declined.

73. My plan had been to go to Maruichi in Brookline and get some chirashi. I was craving carbs and salt so I got extra sushi rice and pickles too!

I had initially been thinking about getting a burger or a pulled pork sandwich but I thought that might be too hard to digest.

74. I also got some onigiri (rice balls) for later. I knew this was too much food but at this point I hadn’t eaten in probably around 15 hours (had a late night protein shake before going to sleep).

75. I ate dinner in my car. Was still wearing my hospital bracelet because I’d forgotten to ask them to cut it off.

76. I’m really grateful they were bring people back in based on how long we’d been waiting. I was so concerned I might not get to have the level 3 CPET before things shut down again if there’s a spike in the fall/winter. It was all pretty chaotic but at least it’s done.

77. I’m trying not to get my hopes up about the results. I’ve had doctors tell me before they were going to get to the bottom of my health issues & no one has so far. Even if this doctor is able to make a diagnosis, it could still end up being the beginning of another long road.

78. There are multiple possible outcomes and all I could do in the meantime was prep a whole bunch of questions for my doctors and wait for someone to call me.

79. The doctor who ran the test said it normally takes 2 weeks to write the report but since my test was just before the long weekend, there might be a delay. So I was expecting not to hear from them for at least 3 weeks, possibly longer.

80. All of the pulmonologists are still caring for COVID-19 patients. My doctor had stopped by to say hello but he was on service in the ICU that day so wasn’t sure he could make it back to join us in the pulmonary function lab (he didn’t).

81. I had wondered what sort of atmosphere I would find at the hospital.
All the hospital staff I dealt with that day seemed to be in reasonably good spirits. I’m not sure how they’re managing but I guess they’re doing okay.

82. Anyway, thanks for reading. I hadn’t intended for this thread to be so long but I know that some of you are also chronically ill and others work in healthcare so I thought some folks might be interested.

83. I’ve been writing these #MedEd threads about some of my more interesting medical tests since people were interested in a sleep study I had last May. My room came with a push-button phone.

https://en.wikipedia.org/wiki/Push-button_telephone https://twitter.com/keikoinboston/status/1123811717354545152

84. Anyway, will update this thread when there is news. In the meantime I’m just waiting...

85. Update:

Sorry been very frustrated and hadn’t gotten around to updating this thread.

86. Found out the reason no one called me with my level 3 CPET results was because my pulmonologist and the pulmonologist who ran the CPET had a miscommunication and each thought the other was going to call me so no one did.

87. When I finally got on the phone with my doctor he was beating around the bush and asking me a lot of questions about how I had been feeling during the test (he was in the ICU that day so hadn’t be there).

I figured that meant they hadn’t been able to diagnose me.

88. Sure enough, when I finally got a copy of the report from the lab, the best they could come up with was:

“...study suggests a mildly reduce exercise capacity suggestive of deconditioning. A minor HR response abnormality may suggest an autonomic dysfunction."

89. We already knew I was deconditioned and this wouldn’t account for the severity of my symptoms so it’s not particularly helpful.

90. Worst part about it is that I found out that I had too much -improvement- over last year’s CPET which means that my numbers were likely so bad last time due to a mask leak.

91. This means that the idea that I had mitochondrial disease was based on faulty data and that I may have gone through a muscle biopsy last summer for nothing? https://twitter.com/keikoinboston/status/1154415395798953984

92. The final conclusion of this CPET report was:

“Study suggests a mitochondrial myopathy is very unlikely."

We already knew this from the results of the muscle biopsy.

93. So I got a referral for Yet Another Specialist (autonomic neurologist) and I’m off to the hospital today for Yet Another Medical Test (tilt table test). Will be starting a new thread for that.