My Covid Experience: (Warning: this is a fairly long post, about 40 typewritten pages)
A lot of what is noted below is notes I took while in the hospital. A bit of it is facebook posts I made while in the hospital and once I got home. There are responses to notes I found in my chart upon my return home and finally, the response I sent when the hospital asked for my opinion of my stay.
July 24, 2021 I wrote to my sister-in-law that I had a slight cough for the past few days but only sporadically so it could just be summer allergies. No headache, no body aches, no sinus issues..just the random cough. This is how it all began. Oh, and let’s not forget, I had just had shoulder surgery 2 weeks prior to the start of my random cough and I was still in recovery from that.
August 7, 2021 I’m still coughing but not super bad, although I am starting to feel a tiny bit achy, it’s probably nothing. After 18 surgeries, I kind of expect something to ache a little here and there anyway. The neighbor had an outdoor concert and Mark and I drove over on the golf cart. Because I had been coughing, we decided to park the cart way behind the crowd and lay low..just in case. (Little did I know I was on the verge of the worst battle of my life)
August 9, 2021 I woke up late and felt kind of awful. Still coughing and now I have a teeny tiny headache but I decided to ignore it because I have to go to my parents house and help oversee the repairs to their house. This mornings advice from my Aunt Betty: “If God didn’t allow sickness and hardship sometimes how would we ever know that He can save us from it?” She is always so wise.
August 13 The word is out. I cant deny I’m definitely sick. A dear friend overnight mailed me Hydroxychloroquine and I took it as directed. Apparently, everyone was in a panic but me.
August15th My cough is now pretty constant, but still no other issues. I have some pain in my chest and am beginning to have a little tiredness and shortness of breath. And I am thinking now that it could be Covid but am resolved to “Power On”. It will go away eventually. If the Hydroxychloroquine was working, I couldn’t tell.
August 17th My husband is now noticeably sick and complaining and I am having to admit that I am also sick, not as bad as the flu I had 2 years ago but definitely very sick. Coughing and shortness of breath, headaches, body aches and other problems are developing rapidly. But the shortness of breath is severe. I can’t walk from one room in my house to the other without taking a break in the dining room to gain strength to make it to the couch.
August 18 Somewhere around this time my husband and mom called an ambulance, even though I begged them not to. The ambulance men put me on the wheely cart and into the truck and checked all my vitals and said my oxygen was at 88, even though the oxy meter we have was saying 75-82. So, I refused transport to the hospital, determined to tough it out and falsely assured myself that it was going to start improving any minute. I am an eternal optimist.
August 22 (to the best of my memory) another friend showed up after 10pm with Ivermectin and I tried that as directed for 2 days. I think it was too little too late. By this time, I unknowingly had full blown double pneumonia… The “powers that be” would have us all think this is “Covid Pneumonia” and somehow different than typical pneumonia. It is not. They are the same. I think.
August 24 I am super, extra sick by now. I cant breathe. I cant even sit up from a laying position without panting like I just finished a Marathon that was 5 miles longer than my fitness level would allow. I am literally falling down with weakness. I have tunnel vision and moments where I can’t form complete thoughts and sort of black out while people are trying to talk to me.
August 25th Wednesday. My sister called my cousin, who is a nurse practitioner to meet her at my house to check on me. My sister lives in Dallas but came to town at the urging of our mom. By this time I am not completely aware of what’s going on around me beyond trying to catch my breath. I can’t think of anything else besides trying to catch my breath. I am weak and can’t walk. My mom has been trying to get me to drink protein drinks for the last few days and is now bringing them in a shot glass and challenging me to try to drink at least one. My husband, sister and cousin and Mom and Dad are all at my house worried. I cannot even lift my head. I am told they were all pacing the floor. I am still telling them it’s no problem, but it takes me several minutes to choke out the sentence; I’m sure it will be fine in a few days. I feel like my head is foggy and I’m missing parts of conversations that don’t seem to make sense. My cousin listened to my chest and said they needed to make me go to the hospital. I was out of energy to fight them on it. I cant speak, I cant walk, I cant breathe, I cant see. I am spent. An ambulance was called and they took me to the Angleton Hospital. The Angleton Hospital Doctor was a monster (or maybe I was dreaming all that?). Even in my limited capacity and with the room spinning I knew there was a darkness surrounding her. Maybe I was hallucinating but even the sound of her voice reminded me of a gargoyle as she barked at me about how I was the problem with Covid because I had not yet been vaccinated. A nurse asked about a test she wanted to order and the gargoyle told her no, were not here to help people who wont help themselves and she needs to go to UTMB in Galveston. They did some preliminary this and that to get me stable enough for the ride and called for another ambulance to take me lights and sirens to UTMB in Galveston. I was thrilled not to be left there with that gargoyle of a doctor. The ambulance driver and other person (Tiffany) were awesome. Very attentive and reassuring and kind. I was suddenly acutely aware (emergency room drugs maybe?) of where I was and the fact that I couldn’t breathe and my vision was cloudy like I was fading out. The ambulance people actually took me directly to a room just like the board game Momopoly where you slide past go and get from the ambulance to your private room without stopping. I was “greeted” by an entire team of people taking vitals and poking and prodding and listening to my chest and starting IV’s and etc.
While in the hospital I was asked many times to revoke my DNR so they could intubate me and/or put me on a Ventilator. I was also “prescribed” various drugs that when I googled them did not have anything to do with Covid or Pneumonia. I refused those drugs. STILL don’t know why they were trying to give them to me.
The nurses were compassionate and kind with the exception of one ogre. The pulmonary people were all excellent..but I was not a super fan of the doctors, one in particular, Dr. Nguyen was an intern and seemed to think that the protocol handed down by the government was to be followed to the letter of the law with no exceptions for patient individuality, symptoms, intolerances, preferences or otherwise. He was extra rude and even while standing at deaths door he kept daily asking me if I was ready to get vaccinated. NO, I am not ready to get vaccinated stupid doctor I am barely alive here, give me a break already. It is startling how many people have asked me if I regret not getting vaccinated as if they know something I don’t. Let me make it very clear, in the beginning I chose not to get vaccinated because I wanted to wait and see how people were responding to the vaccine. Then as reports began to come out I began to doubt the intent and effectiveness of the vaccine. Then I remembered the genetic testing they made me do before my spinal cord surgery that identified a genetic marker that indicated an extremely low tolerance for drugs or jackery of any kind. Put all that together and there was no way I was going to agree to getting vaccinated voluntarily. Not everyone is responding well to the vaccine and if anyone is going to have a bad reaction, it’s going to be me. After 17 surgeries to most of my body I’m already compromised as it is, let’s not throw in some mysterious MRNA business and roll the dice.
I arrived here on Tuesday night at 1 am by emergency ambulance from the Angleton UTMB. The paramedic, Tiffany was professional and kind..but I dont know what route they took from Angleton the Galveston but because I was suddenly more alert than I had been in many days it seemed extra lengthy. Tiffany and her partner for the night actually delivered me directly to the room I am in now. Just drove me right in here on that stretcher like they were waiting for me to get here. Then I I insisted on using the bathroom and nearly stopped breathing. That was a fun little circus for all of us. Most of my 17 surgeries have been at Clear Lake Regional Hospital or the surgery center on Texas Ave in Webster. I love both of those places. I always write when things are like they should be, or better. I do try to keep my words short when I am fully annoyed but the gargoyle doctor at the Angleton Emergency room will be a word challenge for me because I want to tell the world the many ways she was unprofessional, uncompassionate and uneducated and uninformed and downright rude but, I digress. Everything about the Angleton UTMB ER experience was terrible. Except for the grace of God, I don’t know how I even lived long enough to leave there.
From the second I arrived everyone at UTMB cared for me like a friend or family member. Special shout out to a little nurse named Bianca with a slight Hispanic accent and a penchant for referring to everyone as “Mama”. .. and my Doctor, Dr. PATEL who caught me by surprise when I found her gentle candor endearing. Not sure what good it does to tell a dying person they could lose a few pounds. Its a little late to correct that shipwreck when you are already dying. The next day she apologized for being insensitive and we bonded briefly over our mutual vegetarianism. I prayed for her success and wisdom in work and she seemed to appreciate that. I cant be for sure but I think it is the Tramadol that has me more alert now. I keep refusing it, as well as a dozen other meds they keep trying to give me but I think some of them sneak their way in. Just that short snippet of conversation was enough to make me feel like God had placed me in good care with her. That was the last time I saw that particular doctor as she was replaced with a couple of uncompassionate, lego stackers whose only skill was to follow an instruction sheet handed down by our dear government that they referred to as “The Protocol”. Let me be very clear, the “protocol” was not my friend.
On Wednesday night at 3 am I was surrounded by 7 doctors and nurses and more trying to fit in the room..bell’s and whistles going off in the background and I couldn’t even respond to a single question they asked.. I was spent. Lifeless except to hear and repeat it to myself in my head..”she’s in organ failure”. It’s a funny thing, this breathing business, with it, everything matters. Without it..nothing. Just nothing. Silence.
After arriving at UTMB Galveston and having the “team” assess me and get me stabilized and put on High Flow Oxygen and some other source of oxygen one of the nurses told me Channel 2 news had been on the unit and she was frustrated because she just watched the evening news and the numbers they reported were not the numbers they had been given earlier that day. I asked her what the numbers actually were and she said the news reported 16 beds in the unit were all occupied by non-vaccinated people but the reality was that only 12 of 16 beds were occupied and 7 were unvaccinated and 5 were vaccinated. She said anyone who was as bad off or worse than me had been moved to Covid ICU and put on a ventilator..but they couldn’t move me because of my DNR. She said I was a 9.5 on a scale of 1-10 and that the next most sick person was a 9 but everyone else on the floor was at or below 6. I asked for these stats every day of my stay in the hospital and some days the morning nurse and the night nurse had different numbers and when I questioned it they said it was because of deaths and new people coming in during the day and people being moved to ICU. Maybe that’s what happened to Channel 2 news numbers?
August 26, 2021 noonish
I posted on facebook: Please pray for me. I’m at UTMB Galv with Covid. Literally everything hurts. If this is what staring in the face of death is like, I’m not interested. God I need you now.
I actually don’t remember writing or posting this. My first few days in the hospital felt like I just got off the spinning barrel ride at Astroworld and while I was vividly awake I was also in a weird sort of dreamlike trance..kind of like spiraling down the rabbit hole from Alice in Wonderland but waking up in a hospital bed instead of waking up in a picture perfect teaparty.
I also wrote: Dr Patel just said I have a 10-15 % chance to live, someone keeps touching me, stroking my arm..but no one is there. I can literally feel someone stroking my leg, then my arm but I open my eyes and poof, they are gone.
The oxygen monitor in my room keeps taking spiked dips into the 50s and 60s. My chart was noted to say D-Sat to 70..but that was when I got still..if I was up and coughing or turning over it would spike very low.
A sudden onset of bells and whistles call a LOT of people into my room. I am surrounded.
When I crashed there were so many doctors and nurses in my room talking over me, comparing notes, adding meds and IVs and hoses and tubes and monitors and frantically doing what they do I could feel life letting go of me. I simply could not will my body to draw one more breath. My DNR forbid them from starting intubation and I was at the crossroad. I just laid there not able to will myself to draw in a single breath, I was actually thinking: “This is it, my last breath”. I wasn’t afraid. I wasn’t anything, I was void of emotion. I was simply tired, spent, and ready to meet my God.
Over my head I heard one doctor say: “They brought her in too late. I give this a 10% survival possibility” and then someone else rang in with 15%, and still another began to talk about organ failure. That tiny little hole in my vision was getting smaller and smaller. As I lay there listening and literally teetering on the edge of darkness one of the team made her way around the room to my side, leaned down close to me, took my hand and began to speak in a slow quiet whisper that was almost melodious.
She said: “You are not dying here today. People come here not as bad as you and they don’t make it; but you are not one of them. Ignore everything in this room right now and let’s get through this momentary crisis. You listen to me, and she slowly whispered these words: Breathe. Breathe. Breathe.”
She held my hand and just spoke quietly. She was coaching me to breathe and to calm my inner insanity. Her words were timed like the cadence ticker from my childhood piano lessons and somehow, the slow steady breath of life remained with me. She encouraged me to release negativity in the room and accept life. Slowly the beeps and whistles found their rhythm and the other doctors began to peel away, but she remained. I don’t know who she was, I don’t know if she’s been back here but if there is one thing to attribute to not dying in that moment it was that one still, calm, reassuring voice that was willing to stay and hold my hand and help me hang on with little more than a whisper of a will.
Hours later..maybe even the next day I wrote this:
There’s a nurse here. I think she’s awesome. She’s young and cute and energetic and hopeful..but she has just the slightest little Mexican Mom in her and everytime she speaks to me she calls me “mama”…but it sounds like that little dinosaur in the Land Before Time..so everytime she comes into my room I see this tiny baby dinosaur bouncing along sing songing “Mama Mama”.
For the first time in a while I feel like I will eventually beat this. I just lost another IV, its like they just jump from my skin when I’m not looking. The last one had to be inserted with the help of ultrasound as apparently, they can’t find my veins.. I guess the next test is to see if I’m a zombie now. It wouldn’t surprise me.
In the last 3.5 weeks I’ve eaten less than I might normally eat in a day. If I don’t wake up skinny soon, something isn’t right with the world. The replacement doctor forced me to eat a piece of pineapple today. She must be somebody’s mom. She looks like she may be of Middle East descent, and she has one of those long, hard to pronounce names. She told me she was the head of my “Care Team” but that Dr. Nguyen would be the one to come in and gather information and talk to me most days.
Dr. Nguyen is an Intern and, in my opinion, is a complete 100% sub-human, neanderthal, arrogant jerk who has earned a special place in my memory as being unworthy of the position he holds and fit only for use as manual labor on a slug farm. I promise you, if he used the excuse of “It’s the Protocol” one more time I really don’t know if I could have kept from becoming one of those people featured on an episode of “Snapped”. He was THAT awful and more.
Let me just say this: I do not believe “The Protocol” is designed to help people recover and live. Humans are unique individuals and any single blanket approach to medical care cant possibly cover the millions of different ways our bodies work. The government gives the hospital an amount of money for every diagnosis of Covid. The hospital is given another amount of money if you are intubated or put on a ventilator and still more money if you die and the cause of death is Covid. There is NO INCENTIVE to the medical facility if you live. That is bizarre. If a doctor is a “rule follower” or an intern who is afraid to think on his own, then they are basically applying a generic list of “things to do” regardless of your unique physical condition.
Literally not one doctor let me finish a sentence when I first began asking questions about how the “Protocol” made room for my other conditions like my spinal cord injury. I not only think they didn’t know but I really don’t think they cared. Please don’t mistake this as a dig on the nurses, they were all nearly perfect. My lead doctor was mildly acceptable, but that Dr. Ding Dong Nguyen got on my nerves in every way possible. I actually think he enjoyed it. He even smirked at me once when I called him out for not cancelling the Remdesivir when I asked him to.
Unknown date facebook post:
I was just thinking…in Genesis…
And God blessed the seventh day and made it holy, because on it he rested from all the work of creating that he had done. the LORD God formed the man from the dust of the ground and breathed into his nostrils the breath of life, and the man became a living being.
So basically..I just need to rub some dirt on it. Que the backhoe. Seriously, if this is gonna work, it’s gonna take heavy equipment.
Doctor Notes in my chart: “Patient has not eaten since arrival. Explained importance of nutrition. Ordered Protein Drinks, Patient D-Sats when moving to below 80 with occasional spikes to lower 70s.
BP 125/68 Pulse: 76 Temp 99 Patient speaking in full sentences with some difficulty.
Patient presenting with hypoxic RF requiring HFNC at maximum settings, low threshold for escalation to BIPAP, nurse notes no BIPAP on floor even if patient is DNR. Will continue to assess. Plan: – O2 per protocol – C/w dexamethasone 6mg IV day 2 today (8/25- – Started PPI – C/w Remdesivir day 2 today (8/25- – C/w baricitinib day 2 today (8/25- – C/w Albuterol and atrovent inhaler PRN – C/w therapeutic lovenox day 2 – F/u Anti Xa factor on 8/26/21 Polyneuropathy Hx B12 & thiamin def Cervical myelopathy s/p decompression (after MVA) Plan: – C/w gabapentin 300mg TID Pain: Tylenol DVT Prophylaxis: enoxaparin Code Status: addressed: DNR/DNI (signed)
B12/ thiamine deficiency,cervical myelopathy s/p decompression (2008 & 2010), (C-1 to C-7) hx of crush injury left arm and leg (MVA)polyneuropathy who presents with SOB. Pt started on remdesivir, dexamethasone, and baricitinib. Pt requiring HFNC at maximum settings on floor.
Medication Dose Route Frequency Last Rate Last Admin
• melatonin (MELATIN) tablet 3 mg 3 mg Oral QHS
• acetaminophen (TYLENOL) tablet 650 mg 650 mg Oral Q6HPRN
• albuterol[1]ipratropium (COMBIVENT RESPIMAT) 20- 100 mcg/actuation inhaler 1 Puff 1 Puff Inhalation Q6H 1 Puff at 08/26/2 1 0626
• baricitinib (OLUMIANT) tablet 4 mg 4 mg Oral DAILY (Pt. wants consult for necessity of this drug and has questions about side effects)
• dexamethasone (DECADRON PHOSPHATE) 6 mg in NaCl 0.9% (NS) 50 mL piggyback 6 mg IV Piggyback QNOON 6 mg at 08/25/2 1 1210 (Pt refused)
• enoxaparin (LOVENOX) injection 100 mg 1 mg/kg Subcutaneous Q12H 100 mg at 08/25/2 1 2110
• gabapentin (NEURONTIN) capsule 300 mg 300 mg Oral TID (Pt. Refused)
• guaiFENesin (FENESIN IR) tablet 200 mg 200 mg Oral Q4HPRN 200 mg at 9/8/21, 4:05 PM MyChart –
• pantoprazole (PROTONIX) EC tablet 40 mg 40 mg Oral DAILY 40 mg at 08/25/2 1 0900 (Pt Refused)
• remdesivir 100 mg in NaCl 0.9% (NS) 100 mL MINI-BAG 100 mg IV Infusion DAILY AT 1600 100 mg at 08/25/2 1 1717 (Pt is requesting pharmaceutical information)
Pt wants information about all drugs prescribed to her prior to administration of drugs. Pt states she has a genetic marker that clearly identifies her as being highly intolerant to many drugs.
SIDE NOTE: The above was noted just 3 days after my arrival. I was VERY clear that I wanted drug information PRIOR to administering ANY drugs. I made it VERY clear that I would not be taking anything I had not approved. I have a VERY low tolerance to many drugs and was concerned about a bad reaction on top of what I was already dealing with. Because of Covid I wasn’t able to have family there to advocate for me so it was very important to me that the doctors understood my position on prescriptions. This was the first time we discussed this topic and I was very clear about the need to approve all drugs.Ive had 18 surgeries and the last 12 were without ANY pain meds at all, not even Tylenol. Somewhere over the years I’ve developed a strong aversion to anything that comes in pill form.
August 27, 2021 Facebook post:
1. Yall are about the best load of people on the planet. Thank you for your support, prayers, advice, concern, shared music, and even baby cow pictures. I have appreciated all your efforts and selflessness.
2. Its been a very long day that I can only describe as having your head held under water for way too long only to come up gasping for air and coughing just to have someone shove your head back under. BUT THE FEAR OF ORGAN FAILURE from lack of oxygen for so long is no longer being discussed and I am told is a non factor now.
3. ..lungs are still snap crackling. But less like cereal today and more like fire. (Not my words).
4. Doctor said if I hadn’t done something different when I did I may not have made it through that night. Her name is Dr. PATEL, I like her..we had a stilted conversation about God and answering the call for the greater good of mankind in the field of medicine.
5. I still can’t talk normal..but I can type. the struggle is real.
Coughing uncontrollably for past four hours. Extreme chest pains. Oxygen dipping lower and lower. If I am perfectly still and I clear my mind the oxygen will steady itself at 84 but if I move an inch or even think of something rowdy it dips to 75 ..and if I dare to sit up in bed it spikes into the 60s.
More tremors. Doc said no improvement in my chest. Plan to be here at least another week or until God says what’s next.
1. My arms look like I’m a junkie from all the failed IV attempts.
2. Apparently snap crackle pop is for cereal NOT lungs.
3. Steroids will keep you wide awake ALL night and all day for many days and nights.
4. There are 33 leads taped to my chest..but only 5 come out of the machine??? They just keep coming in here with new ones but they never take the old ones off. I have a whole collection. I should save them in a jar, they are probably going to charge me a million dollars each for them! Im probably a millionaire already.
5. Somebody let the reservoir run out on my oxygen and it burned the inside of my nose..and I cant stop imagining that on top of everything else I probably look like bozo the clown by mere association.
Doc Notes: BP 144/75 Pulse 87, 92, 71 120 Temp 97.9 Resp: Bilateral Basilar Crackles Extremities, Cool to touch, pitting edema in left leg. Updated husband who called to check on her. Pt still refusing to eat.
Lori Note: I didn’t refuse to eat, I simply couldn’t do it and had no energy to pick up a fork and sit up in bed…and everything smells and tastes awful anyway. When I do anything but lay still my oxygen spikes into the 60s so it’s just easier to do nothing than eat. It’s interesting to me that the notes in the chart are so close to what actually happened but almost never exactly what happened. They are desperately skewed in the doctor’s favor and often are an exact copy and paste from the day before. Literally.
August 28, 2021 Facebook post: Thank you everyone for your prayers. This has been a hard battle from being in this hospital bed looking up into the faces of medical professionals all trying to say something ..but me being unable to respond to waking up from a 5 minute nod to feeling someone stroking my arm to comfort me.. but no one was there and a dozen other little moments of anxiety, perfect peace, extreme discomfort, unbearable pain and a mighty trust in God above. I truly thank you for your prayers. I am confident I wouldn’t have made it this far without them.
People keep telling me, ” You gotta keep fighting”. “Gods not finished with you” ” I can’t live without you”. And I keep thinking, how can I fight anything? I’m just a giant lifeless mess and I can’t even lift my own arm right now…but in the wee hours of the night I realize it means don’t let this be your last breath if all you have is one more.. then suck it up and keep doing that. It means when they say lay on your front side; but because of the rod in your spine that puts you face down, no left, no right, just face planted.. then today, we face plant.
The other day I thought, “How can I be alive right now feeling so lifeless? Today I wondered how can I be so sick when I’m this alive? .. progress..
How can you say Gods not finished with me? Do any of us really know another person so intimately that we can know the mind of God? I’ve spent a lot of my life not fully respecting the life God gave me. Even after my suicide attempt at 18 (I’m 53 now-at the time of this writing) in an effort to avoid dealing with things I should have been stronger about.. I committed to love Jesus with my life but still held on to the idea that I’d be ready anytime the Lord wanted to take me home to be with Him. I was kind of living my life like “I’m all in, but leave the porch light on for me.”
When Katy (my close cousin) died and I watched her struggle for 10 years and held my own breath as she took her last one, I thought I’d give anything to give her some of my years because she clearly cherished her life so much more than I did…but God used even that to teach me so many things about quality of life. We each must fulfill our own purpose and NEVER EVER GIVE UP.
When I crushed my spinal cord and the doctor said I might not ever walk again my first thought was: “Well if we’re in surgery and things aren’t going well, push me in and let me go.” Then, God gave me a reminder of a dear man, Warren Anthony Harris, who I once knew, who lived his life in a wheelchair after a diving accident, paralyzed from the chest down. I only knew him briefly, but God has taught me so much about not just living because we are all here; but living for joy, and living with what we do have, and not what we think we’re missing. I think of him and pray for him often. Just knowing him taught me more about life than any of the words he ever said to me.
Living for those moments when your step kids demand that you never refer to them as steps…for those moments when a friend calls because they need you to talk them off a ledge or when a desperate mom calls and begs you to help her understand a suicidal son..or those moments of sheer awe when your granddaughter drives the ball down the field like it’s a Mazaretti and she’s the gasoline. Live for the moments like tiny infant fingers tucked into your hand or the strong embrace of someone you know who really cares about you…then go be that somebody to someone else.
Life is about the moments watching your family on the Ring Camera at your house while you are in a hospital and hearing the little one say: “I only need to know where’s my Moppy?”. (The grandkids call me Grandmoppy).
Life isn’t about figuring out the bills in hope there will be some left for retirement or about all the other little nuisances of life..I think maybe it’s about all these little moments where God allows us an opportunity to bless each other and be a constant reminder to always be looking for ways to serve each other in good times and bad. To be kind in the face of adversity. To be silent when words are too much. To intercede to God for each other and and not necessarily to finish right..but to finish this life as riotous as possible. I think its about really understanding what it means to be humble and then putting it into practice. Perhaps the art of peacemaking plays a role in what we were designed to strive for as well as compassion and grace.
To send a prayer in sickness or share a song or a cheerful thought..or queso.. these are the things to be attained, family, friends and the love we display among each other and to each other.
Doctor Notes: BP 115/78 Pulse: 74, 71, 71, 73 Oxygen: 82,88,84,80 Temp 96.4 Cogent/slow/labored speech, No rash, No cyanosis, Edema Left side continues. Start Lasix 20mg IV, Polyneuropathy, Hx B12 and Thiamin Deficiency. Patient refused Gabapentin 300 mg TID. Said she doesn’t know why she needs it. Pt. refused Tylenol. Pt. Refused Remdesivir but agreed when strongly advised. Pt refused Insulin, said she is not diabetic and did not come her to rack up new problems. Pt. requests pharmacy info on ALL drugs prescribed. Advise to pronate. Pt. has hardware in spine. Pt has undergone recent surgery on left shoulder.
LORI’S SIDE NOTE: Here we are again, I asked Dr. Nguyen to stop giving me Remdesivir as well as several other drugs and he refused and wrote in the chart that I agreed when strongly advised. Thats not exactly how that conversation went. I refused and he refused to accept my request. We argued. My oxygen dipped dreadfully low and I went into a coughing fit and couldn’t breathe and he left the room. On this day I refused multiple drugs…of which most still showed up on the bill that didn’t show up till a FULL YEAR LATER.
August 29, 2021
I feel more optimistic today. I did have to be rescued, again, from all these tubes and wires and hoses trying to strap me down when no one is looking.. feisty little suckers, they are a huge nuisance except that they are supposedly keeping me alive. It’s my own little cartoon comedy. I need to put some googly eyes on them so at least they wont seem angry while they are tying me up!
I just saw an ad on google for an ornament that says: “Kindness is free, sprinkle that stuff everywhere”. It’s a good reminder to say something nice to the next person that walks in here.
Also, I need to print my face out cuz my phone keeps saying it doesn’t recognize me. Welcome to the club Galaxy. I dont recognize me either right now.
I’m not sure the second hand on this clock in my room is a good idea. I keep finding myself counting breath and coughs by the second, minute..hour.. it’s the dumbest game ever…but I’m alive to play it, so there’s that.
I don’t recommend trying to brush your teeth in a hospital bed. The googly eyed cords and hoses will work against you. The nurse may unsuccessfully stifle a laugh, the end result will leave you defeated. Your oxygen will dip too low to be worth it. It’s an all-around crummy idea that may take 20 minutes and will make you feel like a toddler.
I was trying to hold back a cough while doc was in here and she stood back and said never hold those in..and about that moment I coughed up something from Ghost Busters and it shot across the room and has been sliding down the cabinetry for an hour. The OCD in me is fighting every urge to scrub this room top to bottom. I need my mom. ..or a nurse whose really humble. Next person in here is on cleaning duty. Sorry y’all. At least it’s clear and shiny. I’m gonna pretend it was a glitter gift from the fairies.
My dear friend Lynn texted and said, I know I should say something profound but all I got is: “Don’t Die and leave me to raise these kids on my own” she wasn’t referring to the grandbabies.. she was referring to our grown kids. I love her…and the grown kids she’s afraid of.
If I had a dollar for every time “Luke. I am your father” passed my brain this week, I’d be rich. Also, I’ve never seen the movies but suddenly I need to know who Luke’s mom is? I wonder if she is also OCD and how she feels about Ghost Busters?
Mark will know for sure when I truly feel better, the Amazon delivery man will tell him.
Finally!!! The cleaning team has arrived and cleaned this room nearly as good as my mom would have. I’d be so impressed if 2 min after they left I didn’t notice a smudge in the chrome of the canister light over my bed. Now I can’t unsee it, I can’t unthink it. I can’t reach it. It might be something from the movie waiting to manifest itself into something truly awful.. or maybe it just needs love and attention and it will turn into a box of doughnuts that will rain down from the ceiling the same way E.T. gremlins did when someone sprinkled them with water? It wouldn’t matter anyway because I still don’t feel like eating.
The cafeteria just called for my lunch order, once again, I ordered nothing.. poor girl just kept reading options and saying are you sure? You’ve been here a week all you’ve asked for is a banana and a cookie? Finally, she said: “I’m bringing you cake”. I think she gets me.
If you are caught in a place where all you can think about is very basic needs like your next breath, you end up spending an odd amount of time planning bathroom breaks.: “Oh what fun well have in 3 hours moving the 3 feet to the bathroom and back” …while wearing the same flamingo t-shirt from all week that is crusty on the sleeve from the 40 attempts to start an IV…also a Ghost Buster moment.
I wasn’t really planning on a new vehicle but it seems like a waste of a really major medical fight not to reward myself when I beat it.
You’d think they could find a way to make a hospital bed at least a 3 on a scale of 1-10 comfort. Honestly this is barely a step up from splintered plywood…but then again I’m pretty handy with power tools. Somebody bring me a few things from my studio. I’ll get this fixed up for the next victim. I can see another building across the way from my window, there’s a nurse looking out and I think she is crying. God bless her.
I just realized it’s only 1:30.. there’s a lot of day left before I can celebrate another 24-hour win. Hold onto your hat people, I expect it’s going to be a bumpy ride.
Trip Advisor does not have an appropriate category for this kind of adventure. But if it did I would give this bed 0 stars….but the big private room is nice and there’s a lovely chandelier; I’m not sure why the nurse keeps referring to it as a body mover.
August 28 I STILL cant breathe. I’m beginning to realize the body aches are doubling with each new day and my peripheral vision is suddenly completely gone but I feel like I can sort of concentrate better than I was before…and the tiny hole I was looking through before is now more like a window. I am WIDE AWAKE. I haven’t slept more than an hour at time since I’ve been in the hospital (that I know of). I would guess less than 6 hours total in the past few days. I’m not just awake I am profoundly awake and my mind is reeling with thoughts like they are on fast forward. I think it must be all the drugs? My mom and my sister dropped some clean clothes off at the hospital but I don’t have the strength to change into them…not even enough strength to have someone help me get into them. My lips are chapped, and my skin feels weird to the touch. My nails are brittle and breaking off for no reason. My oxygen is still averaging 75-82 with dips from 65-75 when I move around or turn over in bed. If you are on forced oxygen shouldn’t that number be higher? They are having to use an x-ray type device to get the IVs in. It took the last person 9 tries before giving up. My arms are bruised from knuckle to armpit on both sides and I am literally covered in sticky residue from the things they keep repositioning on my chest. Every now and then a stray one will adhere to my leg. I can feel it, it is bugging me, but don’t have the strength to peel It off.
I need to take a minute and acknowledge my dear husband. He has been so scared and worried and looking for reasons why this could be all his fault, as if he controls sickness. As a result, he has been cleaning his “spiritual house” and I’ve been blessed to hear him tell me what’s in his heart. I loved seeing him (a short video they sent) and the kids gathered for family time last night.
We had my mom staying with us for two weeks prior to having them send me to UTMB and he (my husband) was great with her. In the middle of all this mom and dad were getting all new flooring, so their house has been upside down. I was dreading having to go get it all back in order while feeling so bad, so when my sister showed up with my cousin Jill I finally felt like I could let go of the reigns for a quick minute. I was thinking if I could just sit down and rest for a minute I’d feel better. Apparently, that’s not how double pneumonia works. Who knew?
Mark is having to take up some slack at the office but it will make him appreciate me, I’m sure. If I had known ahead of time I could have set some fun “challenges” for him or..you know.. ” traps of delightful frustration” (till you realize you’ve been had). I’ll try to plan my next near-death experience better. You’d think I’d be good at this by now?? I’ve actually had 2 friends call and tell me the concept of having 9 lives only applies to cats. I’m breaking all the barriers of stereotypes for cliches about cats and their 9 lives.
There have been some dark hours here, but I’m feeling optimistic this morning. You think that if you ever find yourself standing at death’s door you’ll be in such close communion with God that you could just cry out to him and beg for mercy and talk to Him and know some otherworldly peace; but I’ve felt more like a lifeless lump in his arms being carried through it on the prayers of others. My friends set up a prayer chain and my phone dings as people are praying. It is the most encouraging ding I have ever heard.
Yesterday was a very hard day, like being dragged behind the boat with your foot stuck in the ski rope being bashed in and out of the water relentlessly gasping for even a tiny breath of air with no reprieve interspersed only by gut wrenching blows on nearby rocks ..but around 8pm I caught my breath and for the first time in a month I slept.. for several hours.
This morning feels more hopeful.
Also. I got a call this morning.. my auto warranty has expired.
August 29
Its 3am.. just got my new IV line, again and now I’m just sitting here enjoying the lovely cadence of 2 machines which won’t stop beeping. By “enjoying” what I really mean is that I spent the last hour mentally disassembling all the pieces of that stupid machine and mailing them to their designers, the official buyers for hospital equipment and young hopefuls who think they will improve the world with a simple but highly annoying “beep”.
It’s shaping into a pretty hard day. Drowning on repeat every day isn’t for sissies.
I am still SO VERY AWAKE. My mind is racing from thought to thought. I am still taking notes of everyone who comes in and out of my room and what they say and typing it into my phone so I don’t forget because there are no visitors in the Covid Unit, so I am on my own with no one to advocate for me and remember important details or ask questions. I am also finding odd little stories in the mundane details of the room I am in, almost like a silly dream, except I am more AWAKE than I’ve ever felt before. My mind seems to be processing information in technicolor and Hi-Fidelity Stereo. The 70s would be so proud of me right now.
Doctor Notes: BP 136/80 Pulse: 80,90,69, 79 Temp 96.7 Oxygen 89 at rest. On Forced Air and Face Mask. Pt states VERY ALERT, VERY AWAKE, No rash, No Cyanosis, Pitting Edema Left Side
Unvaccinated. Initial positive 8/24. Does not want BIPAP or intubation if her condition worsens.
– Remdesivir (EOT 9/1; 10 days)
– Baricitinib day 4 today (EOT 9/7)
– Dexamethasone (EOT 9/3)
– Lov 40 QD
– Encourage self-proning
Pt. states frustration with drug regime and was advised to speak to team lead in the morning. Pt states she has refused most of the drugs we are giving her.
LORI’s SIDE NOTE: Again, I am practically begging these people now for the love of God and all things fair and kind STOP prescribing me all this stuff without asking me first. AGAIN, I have asked for them to STOP the Remdesivir and other drugs. WHAT is so hard to understand about this? WHY WONT THEY STOP??? How is it that I dont even notice them putting drugs in my IV till its over? How can I be so alert and so oblivious at the same time?
August 30, 2021
When my granddaughter was a toddler, she was at the kitchen table doing an art project and called out to Mark to bring her some water but he corrected her because he wanted to be called “Gramps” but she wanted to call him “Pop Pop”. When he corrected her, she changed her course of action, struggled off the chair and stomped over to him in the living room crawled up in his lap put her chubby little hands on either side of his face and gave him her best smile, and hugged his neck and said: “No, you-e name is Pop Pop.” The name stuck and was never mentioned again. When a real authority hands down their final word on the subject, let it be.
This week, I had a similar experience with God. He said: (loosely translated from Lori Logic) I am the Creator of the world. I made YOU. I wanted You in the world I made. I decide when you come and go and when you choose to let me in your life, I make all things come together for good. Today is not your day to die. Your life is not over. This is what love looks like. Lori, I love you here in heaven. But I am with you even on earth. Hold my hand, let’s get you healed from this affliction and move on to the next challenge. Together.
It only took 6 days but today I finally felt good enough for a clean shirt to wallow in pain in. I am happy to announce that at 3am this morning I am wearing clean clothes again…cuz you know pain and wallowing really cant be done like a proper lady without at least a clean shirt..and at least one silly movie quote from Gone with the Wind. “As God is my witness, they’re not going to lick me.” Or this one: “Great balls of fire. Don’t bother me anymore, and don’t call me sugar.” Or perhaps a simple “Fiddle Dee Dee” will do just fine.
And yes..now another IV with ultrasound guidance. Because apparently my body does not do what it does not want to do.. now where’s that list of proper etiquette for a new zombie?
Never let your hope boat spring a leak. If you are keeping your hope in a place that leaks you are doing it wrong. I shudder to think of all the hope I’ve lost over the years simply for placing it where it didn’t belong to begin with. If I still had what I started with this whole mess would have been less everything.
I’m not well enough to leave the oxygen supply yet but I do feel my body beginning to feel less like it is in decline. I am experiencing less fits of gasping for air, shorter periods of coughing and brief moments of the memory of normalcy now dance on my mind. Also, I’m a terrible dancer.
I just turned on the tv. For the first time since my arrival, I am feeling good enough to watch something besides the clock. Well, technically it is because they won’t let me watch the oxygen monitor anymore. They literally moved the whole unit out of my reach. So much for the brilliant idea to watch tv, the first thing I see is Whoopie Goldberg talking about Neurtec and Migraines. Who paid her to be on a commercial? This is further proof Texas and NYC belong to 2 different countries. One for nuts and one for the rest of us.
It’s only 5am, its gonna be another very looooong day after another night of no sleep. Is the lack of sleep the result of the drugs? Add that to my list of reasons why I need to know what they are giving me BEFORE they sneak it into my blood.
FACEBOOK POST:
Please tell me, how was your night? Did you sleep well in a comfy bed with too many “My Pillows”? Did you dream all night? Did you get up at 3am and storm watch with me? I need to know..literally NEED to know…something…anything that didn’t originate with Covid, politics or this chandelier ballroom. How do people keep from losing their minds while hospitalized?
August 30, 2021 Part 2 I have all these random notes I’ve written into my phones notes app and they are all running together now. Overall.. I feel way better today than I did than this time last week. I still can’t walk far without desperately gasping for air and looking for something soft to land on in case all this curvy greatness comes crashing to the floor.
Audible conversations suck the life from me and send me into uncontrollable coughing fits. Hunching over my phone is fine in small doses but starting to take a toll on my back and neck. I keep telling these people I’m not here to collect new maladies and annoyances. I am met only with stoic, empty, expressions in response to my cry for relief.
I am blessed to have friends and family call me. I am touched by the prayers they send me via text and the ones whispered into the phone. There are telephone concerts that play encouraging Christian tunes and the few calls from friends who simply cry into the phone and beg me to do what the doctors say.
Doc says the “Snap Crackle Pop” in my lungs is improving. He says the virus is not the big issue anymore. Now we need to address the effects of the virus which is the double pneumonia. I have a whole other list of opinions about that..but I digress. We just need to get some fluid out of my chest. I’m fine with relocating it to my boobs to make things easier but she said that wasn’t standard protocol for this. She has no sense of humor. Go figure. Doc seems to think a medical approach will be more effective in clearing my lungs. Lasix. This means I spent much of the day in cyclical motion. My chest does feel lighter and less cloudy now. I think the plan is to repeat that tomorrow.
SIDE NOTE: In the notes of my hospital stay, Dr. Nguyen wrote that I refused Lasix. No, Ding Dong Doctor, I did not refuse Lasix. I did refuse the other 5 meds you tried to give me that I don’t need. I am not diabetic, I do not have high blood pressure and my heart is fine. I do not need a remedy for gut heath and I’ve told you a hundred times I AM NOT AND WILL NOT TAKE pain meds because they make me sick in a way that is so epic we might all be writing about it for years to come. So, Dear Ding Dong Doctor, if you are going to take notes, please at least be accurate. I did not refuse Lasix, I refused all the other pointless stuff you are trying to push but in your defense I did ask you what to expect with Lasix so I could mentally prepare for multiple anguishing maneuvers to and from the bathroom. Would it really have killed you to take 2 minutes to explain something for more than 2 seconds?
Facebook post: Doc Nguyen lingered this morning for a 15 min discussion with all the questions and concerns and helpful tips from my friends and family. They sent a LOT of helpful questions and warnings. Doc dissected the pros and cons of each and then explained which ones are concerning for me specifically based on my current enzymes, blood work and other collected data. …except 20 minutes after he left and I started googling some of what he said I realized ding dong is too nice of a word for how much disrespect I have for him. I told the nurse all the details and how what he said was different from what I was reading online. She made notes looked it all up and came back and explained a bunch to me. I don’t think there’s a ranking for a person any lower than I rank Dr. Ding Dong. I do not like him. Did I mention that already? Why does he insist on making everything more difficult than it has to be?
LORIS SIDE NOTE: I refused to let Dr. Ding Dong back in my room. Just the sight of him revolts me. I requested to have the lead doctor come instead. She arrived and was extra compassionate and I was so relieved not to have to look at, talk to or argue with Dr. Ding Dong again I almost wanted to hug her. She seems to think Thursday may be a realistic day to aim for going home as long as my lungs keep clearing up over the holiday weekend.
Facebook post: Thank you all again for your prayers, tips, songs, advice, pictures, encouragement and snippets of greatness.
Okay okay.. I get it..THERE’S A PROCESS:
1. Identify the sickness.
2. Pray
3. Figure out how to make it stop growing in size and destruction.
4. PRAY MORE.
5. Squash it like a bug with everything in the arsenal.
6. ACCEPT THE PRAYERS OF OTHERS.
7. Rebuild what’s left. Eat your vegetables. Sleep and Eat. Apparently, at some point your body needs fuel and rest to begin to rebuild. What a marvel the human body is. I ate a half sandwich yesterday.. I am so victorious.
8. LIVE LIFE. BE THANKFUL TO GOD FOR YOUR HEALTH. ACKNOWLEDGE THE VAST NETWORK OF GODLY PEOPLE IN YOUR LIFE WHO CARE ENOUGH TO PRAY FOR YOU AND PRAISE GOD FOR THEM ALL.
NOT THE PROCESS:
1. Identify the problem, lay around at home in abject misery for 2+ weeks trying to convince yourself it’s not getting worse while failing simple tasks like sending one email or taking a shower without collapsing. Try to wear something you’d never want to be seen in just in case you end up with it on for a whole week around people who don’t know you.
2. Refuse EMS the first time your family calls them because you ain’t falling for that. All you need is a minute to collect yourself.
3. Finally arrive at a medical facility and be too far gone to answer basic questions about who you are. Delusion is not your friend. Your ex may be a nice guy but you haven’t seen him in 25 years and you split for good reason so when they ask about other last names used you really kind of need at least one or two wits left.
4. Arrive at larger hospital and literally fall into many hands of comfort and care but manage to muster the energy to question too much and possibly semi offend the experts. I don’t wanna tell you how to do your job or prove you can..I just want you to tell me that you understand the goal as it applies to me specifically so I don’t lay here thinking I’m in the wrong part of the hospital and will wake up with the wrong surgery tomorrow. Don’t even get me started on those dreams.
5. Freak out when they say you have 10% survival rate.. save the freak out for heaven.. we need that energy for proving the odds wrong right now.
6. Also don’t freak out at the term “Organ Failure” for the same reason…but DO let it antagonize you into mustering whatever ounce of movement you need to do what they say will help. Remember, face planting isn’t always a bad thing.
7. Give up. Giving up is not part of the process. Giving up is the beginning of a whole other process but for your family instead of you.
That’s all I got from the Land of Lori Logic today.
FACEBOOK POST: August 31, 2021 I’m finally feeling almost good enough to let them open the blinds on the window again. It was a pretty good day, no major set backs. Reports are all improving. No more forced air full face mask. The other oxygen tether is dialed down to just 60% and there is talk of being home late this week.
LORI’S SIDE NOTE: The change in oxygen had less to do with need or skilled care and more to do with a mishap. There was a problem with the forced air oxygen machine and the nurse didn’t know how to fix it. She called for a respiratory person. It took a couple hours and when the respiratory person came in she still wasn’t able to fix the problem. So by this time I had been without the forced air for almost 6 hours by the time she was able double back after her rounds. By this time, she suggested that after 6 hours maybe my body didnt still need that and made a note. Its a good thing I wasnt dependent on it, or I might not have made it while waiting that whole time. Then the question becomes, if I didnt need it, then why were they still giving it to me? Isn’t there some kind of note on the GRAND PROTOCOL I keep hearing about?? Is there any kind of plan for checking to see if a person still needs that level of oxygen? ..or dare I ask, did I even need it in the first place?
Doctor Notes: BP: 127/82 Pulse 66, 79, 82, 88 Temp 98.1 and 97.4 Sp02: 87, 85, 91, 92
Neck: supple Chest: poor air movement, crackles, no wheezes Heart: RRR, S1/S2, no M/G/R
1. A review of this patient’s medical record suggest CXR and CT 8/24 finding of Bilateral opacities. Please review and indicate if any of these diagnoses may be applicable to your patient’s condition:
– Covid 19 Pneumonia, POA- yes agree
– CXR finding significant for PNA, Pt has Covid 19 + Bilateral Pneumonia
2. A review of this patient’s medical record suggest, abnormal total Co2, RR was high was on 60 L O2 for AHRF in Covid . Please indicate if any if any of these diagnoses may be applicable to your patient’s condition:
– Respiratory Alkalosis, POA- yes – Metabolic Alkalosis, yes
– Other ( Mixed acid base imbalance), POA
August 31, 2021
Doctor Notes: Able to wean O2 requirements down, currently on 60L & 65% FiO2 from 90% yesterday. Pt severely SOB but states that she feels some improvement.
BP 126/68 Pulse: 52, 52, 57, 65 (4x daily) Temp 97.7 & 96.8 Sp02: 92, 91, 90, 87
Acute hypoxic respiratory failure 2/2 COVID-19, HFNC
September 1, 2021
Doctor Notes: BP: 107/64Pulse: 74, 70, 73, 83 Temp 96.7 & 97.1 SP02: 91, 95, 96, 89 on HFNC and
General: NAD, Alert, sitting in bed comfortable, cogent speech, moderate respiratory discomfort Neck: supple Chest: poor air movement, trace crackles, no wheezes Heart: RRR, S1/S2, no M/G/R Skin/Extremities: no rash, no cyanosis, warm and dry, trace pitting edema BLLE
Consult received via EPIC, EMR reviewed and evaluation completed 09/01/21. Patient referred to occupational therapy for evaluation and treatment discharge recommendations. Patient agreeable to participate in occupational therapy. Patient is an unvaccinated 53 YOF admitted for respiratory decompensation and Covid+, now on high flow nc.
Discharge Recommendations: Therapy Needs and Potential: Not applicable as no further skilled acute care OT needs at this time. She does desat in the lower 80’s with movement but rapidly recovers to the low 90’s with focused breathing and rest. She reports a recent history of L shoulder surgery.
OT Diagnosis: Impaired BADL independence, Activity intolerance and Decreased endurance PMH: History reviewed. No pertinent past medical history. PSH: History reviewed. No pertinent surgical history.
Suspected ischemic or hemorraghic stroke patient: No
Various standardized and non-standardized assessments were used to identify at least 5 or more performance deficits related to physical, cognitive, or psychosocial skills that result in activity limitations and/or participation restrictions and Clinical decision-making is of high analytic complexity, which includes an analysis of the patient profile, analysis of data from comprehensive assessment(s), and consideration of multiple treatment options. Patient present with comorbidities that affect occupational performance. Significant modification of tasks or assistance (e.g., physical or verbal) with assessment(s) is necessary to enable patient to complete evaluation component
LORI’S SIDE NOTE: These notes are laughable. “History of Left Shoulder surgery” yes, I had shoulder surgery less than a month before Covid hospitalization and they kept telling me to roll over but it was excruciating to roll onto that side because of the recent surgery. I literally tell them my shoulder is tender every day..EVERY SINGLE DAY, Multiple time per day. Also, notes say: “NO pertinent past medical history” and “No pertinent Surgical History”. Hellooo, would you call SEVENTEEN surgeries in the past 10 years NOT PERTINENT?? Would you call a crushed spinal cord that required 2 major life threatening surgeries and extensive nerve damage and 7 fusions “NOT PERTINENT”???? I tried to tell the doctors about the parts of that injury that INDEED DID matter to my current condition and was repeatedly dismissed with a statement like: “Were not here to treat that concern at this time”. Well, maybe not, but to say that it doesn’t factor in is asinine. Newsflash, no one single part of the body acts independent of the other parts of the body so IT DOES FACTOR IN.
Facebook Post: September 2, 2021
Sleep is a medical necessity!
I truly haven’t slept much over the past month, literally less than 20 min a day most days..but then night before last a whole glorious 4 hours followed by a somewhat good day..till about 4am where things went way South and took me with it. Finally around noon someone brought me a pill menagerie of things that induce sleep..and I just woke up.
Here is what happened this afternoon with my eyes closed: (lightly dusted in actual true events that my dreams twisted to fit my current situation)
1. CIRCA 1974 Inks Lake, family boating day and the boat is filling with water, I jump off the boat and dad has 2 feet planted on a rock on the tip of a waterfall holding the boat on the left and me on the right.. water bubbling and thrashing to take us all down as it clouds my face and robs me of breath and wakes me up before I have to watch Dad anguish anymore over me or the boat.
2. CIRCA 1977 New Braunsfels with the cousins and that one pesky little 2 ft waterfall turning me over and over and not letting go and cant catch my breath.
3. CIRCA 1981 Texas City Sunday Catamaran sailing and the boat tipped but I didn’t scramble back on before it caught the wind but managed to the grab the dolphin bar only to then have the force of water from both pontoons aim for my face like firehoses on a mission. The boat surges forward , I cant breathe, I cant get away from the gushing water and I can’t let go.
4. CIRCA 1978 Lake Livingston and dad is trying another new flying hobbby..instead of the actual flying toy (a hang glider that year) we had ..in today’s dream it was a parasail. We went up and up and then crashing down, the parasail landing on top of me trapping me between the sail and the water and the ropes are heavy and trying to pull me down and I cant find even a pocket of air and I hear someone over me looking for me but it’s too late ..I wake up relieved to find real air in my chandelier ballroom here at UTMB.
5. CIRCA 1974 in Santa Fe, TX were playing with the neighbors’ and they just got a load of sand delivered…but how did I get in the bottom of the whole load, why can’t I dig out? What is Edwin screaming at? ..but it is the tiny hand of Cheryl Ronning who digs a tiny hole near my face and a tiny white flower appears in the light. I wake up. Thanks Cheryl.
5. A dog.. a massive drooling dog licking my face, he’s not angry just really big and relentless I can’t get away, there’s drool and dog fur everywhere, he outweighs me and is big like a wet blanket with dueling overhead cam pistons of life sucking breath and drool.. which is too bad because if I wasn’t dying from his drool he’s a beautiful white shaggy dog. I just can’t escape him.. I wake up..back here at the chandelier ballroom at UTMB where only the googlie eyed hoses and tubes are trying to enslave me.
Thankfully I’m breathing better this evening than I was this morning..but that afternoon thrill ride was a whopper.
Doctor Notes: BP: 113/70 Pulse: 67. 90, 62, 61 Temp 97.8 and 98.1 Sp02: 91, 93, 92, 90
Today she states she feels better however still gets SOB with prolonged speech and with coughing. Chest: poor air movement, no wheezes Heart: RRR, S1/S2, no M/G/R Skin/Extremities: no rash, no cyanosis, warm and dry, trace pitting edema BLLE
Patient presenting with Step-through gait pattern. Gait is slow steady, short steps with wide base of support and lateral sway. O2 Saturation at REST on Room Air = patient is on HFNC, 55 LPM, SpO2 at 85%-90% O2 Saturation at REST on 55 LPM of Oxygen = 85%
EXERTION TEST O2 Saturation at Rest on Room Air = patient is on HFNC, 55 LPM, 55% FiO2, SpO2 at 88% O2 Patient is able to independently move around in the room, limited only by the HFNC cords and shortness of breath.
Subjective: Patient was seen in her room on HFNC and showing shortness of breath Patient/Family Goals: Patient wants to go home. Patient/Family verbalizes understanding of condition: Yes
LORI’S SIDE NOTE: “No wheezes” (noted above) is an interesting note since after leaving the hospital the pulmonologist (Maksoud) and my regular care doctor (Amir Salim) noted wheezes and crackling in my lungs for an added 8 months after discharge. Am I to assume that for this brief shining moment my lungs cleared up like a miracle only to resume their poor state upon my discharge? Check your stethoscope doctor, it might be broken.
FACEBOOK POST: September 2 , 2021 Part 2 Yesterday was a 3 steps forward kind of day. I was hoping that when the doc came in today we could make an exit plan…but I’m struggling to breathe this morning.. still hoping to reign it in and claim flight status…I’m not sure how I will manage at home but I know I can’t stay here another week. I don’t think they are doing anything new medically, aside from pushing drugs that I have battled them to stop prescribing. They FINALLY gave up on asking me to redact my DNR. Is that even morally ethical? I think it was Dr. Ding Dongs personal life goal to get me on the ventilator and his defeat was the reason why he’s been so extra crabby every time I see him. He also didn’t like the fact that I refused to let him bring me the vaccine. Surely, even an idiot can recognize that you don’t vaccinate someone (with an MRNA treatment) WHILE they are actively battling the thing you are trying to vaccinate for? Is it just me or does this sound ridiculous? I wonder if his mom is proud of him for becoming a doctor or if she secretly believes there’s a chance that he is doing more harm than good? Moms know things.
September 3rd 2021 That’s it. This blithering idiot, Dr. Ding Dong, has pushed me over the edge. Who knows, maybe that’s what he was aiming for. What am I doing here? I CANT BREATHE. I am developing bruises all over my body. My fingernails and toe nails are splitting and/or breaking off. It feels like a very heavy rock has been sitting on my chest for weeks. My arms and legs are so weak, I feel like I’ve just endured the worst work out of my life even my eyeballs hurt. I can barely get myself the few feet to the bathroom, but I am going home. If I am going to die, at least I’ll die in a comfortable bed and not from being strangled to death with an oxygen hose or at the hands of this sadistic doctor.
I told Dr. Nguyen (Ding Dong) I am going home, HE LITERALLY ERUPTED. It was a verbal volcano. He said if I go home against medical advice he will not help me whatsoever. He will not arrange home oxygen, he will not this and not that and blah, blah, blah. I gathered up every ounce of self-control within me and with no facial expression whatsoever and not an ounce of the aggression I was feeling I quietly told him no problem, you are free to dismiss yourself from the agony of my treatment. I am so sorry I troubled you with my near-death experience. Silly me, I had thought he was a doctor and that’s what doctors did..but it looks like that was my mistake.
September 3, 2021 I’m finally feeling almost good enough to let them open the blinds on the window again. No more full-face oxygen mask. The other mask is dialed down to just 60% and there is talk of being home late this week if I can make it across the room without my oxygen dipping to below 85. Technically, they said without dipping to below 94..but my goal is 85….and if smokers live with an oxygen level of 80-90 then it seems to me that I can manage going home even if its a little lower than 85…but that could be the optimism in me. I have a tendency to look at medical concerns with a glass is half full kind of attitude.
Doctor Notes: (because apparently, Dr. Ding Dong, couldn’t stop beating a dead horse)
History: Started on Remdesivir, dexamethasone, and baricitinib due to respiratory decompensation. Requested Ivermectin and Vitamin therapy, counseled on the lack of evidence regarding these therapies. Counseled extensively regarding importance of vaccination for her and her family despite having acquired a COVID-19 infection however the patient adamantly refused upon multiple occasions and was not amendable to further discussion.
LORI’S SIDE NOTE: YES, I refused Remdesivir and a week after refusing it I discovered they were STILL putting it in my IV. I told them again not to give me any more of it. I looked it up online and they had already given me the recommended dose and were starting another round. For the love of Pete, what the heck? If you are going to restrict anyone from being with me to advocate for me, then at least honor my requests when I ask you for something important to me. I also refused baricitinib as well as several others, they couldn’t sneak all of them in on me since most were pills that had to be taken by me personally and not just pushed through an IV) I AM LIVID that my requests were not honored…but the nurses are amazing.
Attestation signed by Dr. Aboueisha: I personally examined the patient on 09/03/21 and agree with Dr.Nguyen’s resident note as written. Pt insistent on leaving despite her high O2 requirements. Risk & benefits were discussed with her & she understands the risk of leaving the hospital with high O2 requirements. Also, re-iterated to her that she will still need to be in isolation if she goes home until she is 20 days out from her initial positive test. Severe bilateral multifocal patchy and confluent airspace opacities concerning for atypical infection including COVID 19 pneumonia. Preliminary Report Dictated by Resident: Samuel O Krider I, Peeyush Bhargava, MD., have reviewed this study and agree with the above report. Failed 6min walk and insisted on leaving AMA (against medical advice). Application for home O2 will be filled despite the patient filling out AMA paperwork.
LORI’S SIDE NOTE: Yes, I insist on leaving, because Dr. Ding Dong is trying to win the prize for most death certificates that say Cause of Death: Covid. Also Dr. A already said because of the holiday weekend she and the other team members would be turning their patients over to the weekend relief team and because of completion of the steroid regime and my refusal for more Remdesivir there really wasn’t anything else they could do for me besides monitor my progress. If they were actually monitoring my progress I might have agreed but when they take my oxygen and I can see on the room monitor what it says and what the finger cot is reading on the portable monitor and those numbers don’t even remotely match it becomes obvious to me that I would be just as well off taking my own unreliable stats at home where at least no one was writing them down in a chart as if it were gospel truth. Even when I point out that the two readings of the same person at the same time had different numbers, not one person seemed to think that was a problem. Furthermore, how can a person take another person’s temperature three times in 5 minutes and get three readings and then randomly pick one to write down with a clear conscious?
Doctor Notes Continue: Notified by nursing staff that the patient was insisting on leaving today. Discussed with her that there was never a planned or set date of discharge on multiple occasions and that her discharge depended on the ability of our team to safely wean her oxygen requirements to a setting low enough to be continued at home. She insisted that she feels fine enough to be at home and states that her other medical conditions (back pain, neck pain, cold fingers) were flaring while she remains in the hospital. I counseled her regarding the risks of leaving the hospital especially since she failed her 6min walk (desatted to 70% from just standing up on 2L for for <1min), and that despite some improvement over the past 24 hours, our team did not feel comfortable safely discharging her in her current state. Additionally, throughout her stay, she has been counseled multiple times regarding her need for isolation of 20 days after initial positive COVID result due to the severity of her infection and the very strong recommendation for her and her family to be vaccinated. She adamantly insisted that she wanted no part of the COVID-19 vaccination discussion. She acknowledged that she needs oxygen and requested we supply her with oxygen. Told her that our team would submit an application to supply her with home O2 despite her signing the papers to leave against medical advice. She signed the AMA paperwork with full understanding of the possible repercussions. 1 Minute standing on 2L NC Oxygen 70%.
LORI SIDE NOTE: There are a gross number of errors and discrepancies in the chart. Exaggerations and inaccurate 02 readings are present. When 02 was measured on my finger numbers were generally much lower than when they were measured across my forehead and when the nurse would come by for vitals her numbers NEVER matched what was on the monitor, not even once. I have extreme poor circulation in my hands due to Raynaud’s and nerve damage from prior surgeries on that arm and repeatedly reminded doctors and nurses to no avail..and my repeated remarks are nowhere to be seen on the chart. Dr. Ding Dong repeatedly tried to force me to agree to the vaccine and got highly agitated when I simply stated that I would not discuss it with him again. EVERYDAY he was harassing me about the vaccine. The dumb thing is, I never even told him I was refusing it, I was trying to keep it simple by saying I simply wasn’t ready and didn’t want to do a vaccine while actively sick. He took it as a personal offense against him and made no secret that he bitterly blamed me and people like me for the spread of Covid.
LORI NOTES: September 4th Last night was long and treacherous. I may have even had a setback as my oxygen meter is low again. The lead doctor came in, apologized for Dr. Ding Dong and asked a series of questions and asked permission to have Physical Therapy come in and do an exit assessment and various other things on her to do list. I agreed.
Physical Therapy and Occupational Therapy both came in (at separate times) and performed their routine exercises, like, can you stand up on your own? can you lift your hands over your head? …and other simple tasks that all made my oxygen plummet, but they were not there to measure my oxygen, only my physical ability. Both therapists were over the top kind and presented themselves professionally and left no doubt as to their dedication to good patient care. Both therapists wrote on the chart that there were no boundaries that prevented my discharge. They were not only professional but pleasant and caring. I was so impressed by both of them.
Next up; pulmonary. A nurse came in and said she was going to do an 8-minute walk test and 1 minute into the test my oxygen dipped to 82 and she terminated the test and said she was recommending that I not go home. She was without emotion, like a robot, she stated facts and left.
The doctor came back and read the results to me along with a long list of reasons why I should stay a minimum of another week. I told her that I respected her opinion, but I felt that staying would exasperate my other issues (that they refused to acknowledge) and because they had no plan for any other medical treatment other than resting and monitoring vitals, I would be better off at home, and she agreed to write up my discharge papers. I feel it is important to add that if I had not been so completely and utterly verbally attacked every day by Dr. Ding Dong Nguyen I may have considered staying the recommended time.
Nurse T (name withheld on purpose) came in and said she called my family and told them I would be ready to go at 4pm. She arranged for portable oxygen at my house and made me a list of emergency stops on the way home if I needed to make an emergency stop along the way for oxygen. She also took a moment and said a prayer and told me about her grown kids and how she felt her livelihood had been threatened when they assigned her to the Covid unit after refusing to take the vaccine. She waited with me till the transport person arrived and wished me well and asked me to pray for her relationship with her kids. I wish she had been part of my care team, at least when we spoke, I felt like she was really hearing me.
No follow up instructions were given. No suggestion to see a doctor at any point. No notes about therapy or what to expect. Nothing. A friend who is a respiratory nurse came over with a bundle of reference material for me. It was more information than I got from the doctors combined during my entire stay at the hospital.
September 4th Part 2 At home with portable oxygen and I literally cannot live without it. If I take it off even for a minute my oxy meter jets to below 70. Coming home from the hospital, all I want is a shower..its been 2 weeks…but upon arrival I just do not have the physical strength to walk all the way to the shower much less actually take a shower. It takes me 3 days to muster for this task. On the night of my return home Mark’s daughter comes over with balloons and flowers and kneels in front of me and puts her head on my lap and cries her eyes out. I am helpless to console her.
September 5, 2021 As of last night, I am home. It’s been more of a challenge being home than I expected but still better than the hospital. I’ve just discovered that all these pillows in the house are super extra appreciated under the right circumstances. Poor Mark, all night long has been jumping up at every little sound to make sure I’m okay.
September 8, 2021
Sorry I’ve been quiet. Yesterday was rough..but as evening arrived I began to feel better. Today has been much better.. even sat at the computer for 20 minutes and paid a couple things before we’re sitting here with no electricity.
Gwen (my sister) came this morning with smoothies, then mom came over and Gwen went home to Dallas. Hearing how many people in my unit were previously vaccinated but still sick was surprising to me. ..but the nurses did say the vaxxers were overall less sick than the anti vaxxers. Still unbelievably hard to maintain steady breathing, but as long as I’m relatively still I’m not that miserable. The hospital put a note on my billing that says “indigent”. Nice. I am not indigent. Just because I couldn’t give you billing information upon arrival doesn’t make me indigent. I know its just a technicality in paperwork, but I still didn’t like being referred to as indigent.
September 9, 2021
I was supposed to be leaving on this date for a planned girls spa getaway to New Mexico, instead I’m home fighting to breathe and kind of depressed about it. I’m optimistic I’ll feel well enough for my planned trip to Kentucky next month…(but spare the suspense, I didn’t make that trip either). (It would be a full year before I recover enough to travel again and even still, with some discomfort.)
TELEDOC APPT AT 8:30AM QUESTIONS FOR THE DOCTOR
1. What about blood thinner? Do I need to still be taking Bayer? If so, what strength? and for how long? Take Bayer, 2 weeks, 81, 2 baby aspirin..not full does of .325 (Of course, you know I’m more into holistic alternatives so all that translated into “drink more white willow bark tea)
2. My oxygen meter readings at rest are 91-96 and if I just walked a few feet to the bathroom they dip as low as 80..but recover to 90 in about 2-5 min. Oxygen machine set to od 3 liters per —walking causes desaturation. Keep the oxygen machine at 3 for the next week then try to turn down to 2.5…then see how its going. PROGRESS, I see myself throwing this machine in the bayou soon!
3. The ER took a chest X-Ray upon admittance but not again after that. They said they relied on what they could hear in my chest with the stethoscope. Improvement from Covid on a CT Scan or Xray takes at least 1 month. Doc recommends a 3 month if I want it but thinks it would be more beneficial to come to his office in person and let him listen to my chest.
4. I left the hospital against medical advice. It was the Friday before the long weekend and the doctor said I was done with all the meds ordered for me and that staying was precautionary. I was also developing new issues as they relate to my previous spinal cord injury and when I asked about those issues they said they were only there to address my COVID issue. Discussed with Dr. Salim options for getting the numbness in my feet and hands to improve.
5. Teledoc (actually my PCP from Webster) asked about why my chart says “refused Lasix”. The doctors notes say that I refused Lasix.. I DID NOT REFUSE LASIX.. I refused Lasix at 8am every morning while doctors and nurses were stopping by frequently. I STILL got 4 days of Lasix..but at NOON instead of 8am. When they first said “Lasix” I was imagining having to go to the bathroom all day every 10 minutes. What actually happened was that I had to go about every 30 minutes for about 3 hours till the Lasix wore off. Just another inconsistency in how Dr. Ding Dong took notes and relayed information.
6. Is there a process or tips and tricks to ween off of Oxygen any sooner? I have one of those breathing exercisers. Or is this just a matter of waiting for my lungs to heal? Any idea how long that might take? Doc suggests breathing exercises at least 3X daily. The hospital did not tell me what to expect or how to proceed but my sister found several “Post Discharge Covid instructions” from other hospitals to follow. I ran some of this past Dr. Salim and he asked me to send them to him to which he replied to the next day and said they were all excellent tips and guidelines. Too bad UTMB didn’t have something like that, but maybe they did and Dr. Ding Dong just didn’t give them to me because of his fragile ego?
7. Should I continue with Vitamin C, D and Zinc? For how long? Is there anything else that will help heal my lungs? Continue Vitamin D, C, Zinc and Bayer. Add Corceptin or is it Quertin or whatever? What about B’s? Ask about Colloidal Silver? A homeopathic remedy..doc usually uses it for wounds..but doesn’t think it’s helpful for respiratory issues. BPC 157?? Doc is gonna research it for lung health. He said to continue all vitamins previously suggested until further notice. I wish Dr. Ding Dong were more like my PCP.
8. STEROIDS? Steroid Inhaler prescribed but difficult to use since I can’t draw in enough breath to get it all the way to my lungs. I quit trying after a while, besides, I have a mental block about steroids being actually good for me.
Do Albuterol 2X Daily. And Follow up with steroids? Not IV..but steroids that target the lungs. Be sure to gargle after steroids to avoid THRUSH ..also, I quit the inhaler as I didn’t feel like it was making any difference. Did I mention I hate pharmaceuticals? ..you know, just your general unsubstantiated paranoia.
9. Coughing: Doc will call in Tesalon Pearls but advised that it’s better to cough as it is the body’s way of getting rid of junk in the lungs… if that’s true why did the hospital bring those suckers to me every other hour? ..and why are you giving them to me now?
September 13, 2021 Good Morning! I finally slept a whole 3 hours. (The last 2 were restless, but I’ll still take it) I’m still having a hard time walking even 6 feet without it sending me into a fit of panting like a dog to catch my breath and plummeting my oxygen levels as low as 75…which is the brain damage zone.. I really need to read more about that. On the bright side when I’m just being still and wearing the canula (even though it is making my nose raw) my oxygen is staying on the mid 90s…the goal is 98-100. It’s been a week and 2 days and 2 showers since I got home from the hospital and I can tell there has been progress. Slow, teeny tiny baby step progress, but still, progress. I can take deeper breaths. I’m coughing up much less from my lungs, I can inhale enough to blow my nose. The recovery time when I walk from A to B seems to be less and less. The idea of moving a few feet is less daunting. My appetite is back… enough that I’m eating again but not like it was before, which is maybe a good thing? I’ve lost about 25 lbs. Mark has been remarkable and surprising in his care for me; he even wrote me a really special love note. I want you to know so many have shared a specific prayer at a specific time, and it was exactly what I needed in that moment. Some of them were kind of obscure things no one would think to pray and yet exactly what I needed not only for the content of the prayer but also that supernatural connection to God when I was too weak to utter even the name of God in the depth of my sickness. Now, as a new week begins, I beg that you would keep praying for me. Specifically, about the need for this oxygen. It is an albatross around my neck and the source of much anxiety as I check my levels dozens of times throughout each day. I am so deeply grateful for each of you, for your thoughts and prayers and for reaching out to check on me so often I’m not sure if I have ever felt so loved in my whole life.
September 14th, 2021
Quote from my dear sweet husband: “Good grief, I have a new appreciation for how much stuff you do everyday.”
September 22, 2021
For everyone who has been texting and calling thanks for checking in. I’m making progress but mercy it’s more like turtle speed than rabbit speed…but God is good, everything outside of my bubble is taken care of. The office is running smoothly without me obsessively thinking about it everyday, my husband isn’t sick of helping me with stuff (he’s at the grocery store now) and I got plenty of time to pray for my friends and family. So I’m just going to praise the Lord and keep waiting for complete healing.
September 23, 2021
I asked my mom to take a picture of the inside of the refrigerator the other day when I first got home from the hospital. I was sitting on the couch when Mark came home and as he was looking for something in the fridge. I told him “It’s in the door, 2nd shelf under the milk in the middle next to the mustard”. He didn’t know about the photo. Mark now thinks I am a genius. WINNING.
September 25, 2021
I think there needs to be some kind of reward or at least a cookie for people who are stuck at home with nothing to do but shop online. Not for the treasures they DO find. But for all the ones they sacrifice and don’t get.
I’m counting the days till I can resume my normal life. Being this limited is challenging (I get winded just wandering around the house and I STILL don’t have my voice back-but at least I’m not tired or in pain) but I’m counting my blessings and using my time as best as I can (minus the shopping binges).
A few people have stopped by to check on me in person. I treasure the time they took out of their lives to come help the hours pass. Thank you, Cindy. Thank you Michelle V., Thank you Kelly S and Joey. Your selflessness is deeply appreciated. There have also been offerings of food from the Pinaks, Kyle and Amy and Suzanne and others. Each one of you are a blessing to me and to Mark.
Scott Martin (Sept 29, 2021) and Jason Hambrick (September 27, 2021) both pass away within a week of each other as I am recovering from Covid, they both pass this life as a result of Covid. They were both hometowners from Santa Fe and pretty close to the same age as each other and pretty close to my age too. They have wives and kids who depended on them.
I’ve known Jason’s widow as a result of her being my sisters, sister-in-law but we’ve never really had an opportunity to bond but suddenly I feel so close to her in a spiritual way and I can’t stop praying for her as she navigates this new season of life.
Scott Martin used to go to church youth events when I was a teen and then later played basketball at the old church gym with my brother-in-law and his brother Jason. Then many years later Scott bought the house next to my mom and dad. Both men, Scott and Jason were men who loved God and their families, and both will be forever missed by many. Our earthly loss is heavens gain. I will undoubtedly forever associate my struggle with Covid with their great loss.
I am deeply sympathetic and grieved for their spouses and kids. I am forced to take account of my own life and those around me and ask the questions that near death and actual death brings. I am counting my blessings while also feeling a bit of survivor’s remorse. Their passing creates many questions in me about death and how we live our lives and our state of dependence on God and each other.
October 3, 2021 My husband makes me do another teledoc appointment with our local doctor because he can’t believe I’m still this sick. I can’t either but wouldn’t take it on myself to make an appointment without his prodding. The doctor again prescribes an Albuterol Inhaler, Steroids, Antibiotics and instructs me to stick with an herbal regime of Zinc, Vitamin C, Glucosamine, Vitamin D and 2 different B vitamins. (I think the Bs were not necessarily Covid related I just I tend to be super low on B as a general rule.) I am still very short of breath and still coughing a lot.
XRAY Appointment: After walking down the long hallway to the x ray room The x-ray technician sees me trying to catch my breath and calls for a paramedic. (Who knew they had paramedics in the imaging place?) I re-assure her I’m fine and don’t need it. She isn’t giving in. After being seated a few minutes, I manage to muster enough of a rhythm in my breathing that she agrees to proceed with the x-ray. She takes the x-rays and approaches me looking pale and scared and says: “I think you have a really bad case of Covid Pneumonia; you should prepare yourself because as soon as your doctor sees this he is probably going to send you to the hospital”. I tell her: “No, I HAD Covid 2 months ago, this is a follow up x-ray to see if it’s improving”. She said: “If your pneumonia was worse than this 2 months ago, I don’t know how you made it; I don’t even know how you walked in here today.” Her gentleness and compassion wins her a spot on my “Hero List”.
October, 2021 Well, goodbye Kentucky trip, I still cant walk very far without falling apart…the idea of navigating an airport is as foreign and unrealistic as the idea of living on the moon.
October 18, 2021
Nearing the end of October I just cannot stand another day of these tubes coming out of the home oxygen machine. I think if I commit to not moving around too much I can live without it. First, I called Kevin Murillo (he was pretty sick too) to ask about his experience and how long it took for him to get off the oxygen then I called to have them pick it up. They urged me to keep it another week or two but by this time I’m thinking, If I die, I die. Take it away. Without oxygen my oxy meter levels slowly climbed from an average of 82 to 88 over the course of about 3 weeks.
Mid October, Laurah Ward is in town, she came over with Sophia and Cindy and they brought lunch. I tried to put on a happy face but as much as I love and appreciate my friends I was completely and utterly spent by the time they left, but if I had it to do all over, I wouldn’t change a thing. As exhausted as I was, my heart and soul were lifted just seeing all of them.
October 21, 2021 My PCP called with the results of the new x-ray and prescribed new steroids and antibiotics and said keep pushing the vitamins. X-ray results showed only about 25% improvement from the pneumonia but I really thought it would be more like 60%… I guess I’m a little too optimistic or… anxious?
November 1st, 2021: Facebook Post– I’m so excited that it is November 1st. No more ads for scary shows on tv, no more scary clowns…the birds are singing, the crickets are chirping, the fish are jumping and even the rocks cry out “Praise the Lord”. I am done with the worst of my Covid recovery, (according to me) and I even ventured out of my house for the first time since early August. Mark and I went to a restaurant. We sat in a corner so no one would notice me panting like an animal from the short walk from the parking lot to the dining room. I am not back to normal but I am definitely way better. I keep seeing everyone posting pictures of all the fun stuff you are doing and it’s got me ready to jump in with both feet after having had to cancel both of my fall trips. Bring on the Holiday fun stuff!!! Even if I’m not physically ready for it, I still cant wait to have it happening all around me. My oxygen is still dipping into the 80s when I overdo it but is maintaining a strong 92 when I am completely still. I’m still coughing. My chest still feels heavy but there is a new sensation where I think I can actually feel the emptiness of my lungs. They hurt when I breathe but it’s almost like they hurt because the air is touching places it hasn’t been in a while. I’m going to take it as a positive sign. Brighter days are ahead.
November STILL coughing. Still SO VERY short of breath. Another teledoc appointment and prescribes another round of steroids, this time ones that you inhale into your lungs; not sure how well that’s gonna work since I cant breathe deep enough for it to ever reach my lungs? Chest xray reveals an enlarged heart…as well as continued pneumonia. I seriously thought that my pneumonia was clearing up but… not so much. I also thought pneumonia only lasted about 6 weeks… WRONG. And yet, I’m starting to feel like I could venture out a bit if it doesn’t require too much physical exertion. Mark and I go eat out, we choose a place that’s practically empty at 3pm..the waitress is looking at me panting like a dog trying to catch my breath..but doesn’t say anything. I am pathetic. I know.
December Great, now my hair is falling out and I can actually feel my heart pushing against my chest and triple bonus all my muscles are so weak that every injury I’ve ever had is magnified and I think I may have reinjured my knee AND my shoulder. I am growing bitter against sickness in general and Christmas is coming, and I feel like I’m missing out on SO MUCH. I’m starting to think I’m never going to feel better ever again. A few dark days of pain and exhaustion cause me to wonder why God made me live.
December 4th I cant stand it. I am meeting friends at National Oak Park for Christmas in the Park. Thankfully it was a rainy day. God graciously brought the rain at the perfect intervals so that we were forced to sit down and wait it out several times in the hour we were there so I could catch my breath and re-charge so I could walk a little more. All that to say this: VICTORY! One small step for me one giant leap for my optimism and sanity. I wonder if my friends know how epic that day was? ..or how difficult it was for me?
December 22 Orthopedic doc assures me that my knee, neck and shoulder are all okay just stressed and weak.
December 23, 2021 Listening to music today the words: “The weary world rejoices” and I realize just how weary I am..and considering the state of US Politics, Epstein Island trials, Covid, the death rate and everything else and I am overwhelmed with how weary the world really is not just for me, but for all of us.
December 27th General care doctor says I STILL HAVE freaking pneumonia and gives me MORE antibiotics and instructions to vibrate my chest to try to get it up and outa there. On the bright side, my oxygen levels are up to an average of 89. How come no one told me to agitate my chest months ago? I have measured the oxygen of Mark, Jesslyn, my mom and the lawn guy..because I need numbers to compare to. Jesslyn only scored 96 and Mark was at 93 so I’m feeling like my average 89 isn’t too bad.
January 6th the chest vibrations seem to be working, I am still weaker than normal by a longshot and still short of breath but finally feeling good enough to think I will one day be able to put this all behind me. I even went to the store and walked up and down a few isles…not all of them..but it’s a step in the right direction. I’m gonna call it therapy. I’m still coughing up yuck from my lungs, my heart still aches from being enlarged, my muscles are still weak, and friends still remark about my shortness of breath but I’m ready to get on with my life and I’m confident that in time I’ll be normal-ish.
January 19, 2022 My mom just made me make an appointment with the Pulmonologist. I think having shortness of breath might be my new normal.
As C. H. Spurgeon wrote, “Our griefs cannot mar the melody of our praise; they are simply the bass notes of our life song: To God Be the Glory.”
THE HOSPITAL WANTS MY OPINION???
Oh boy, they have no idea what they have just unleashed.
Here is my response to their 2-page questionnaire:
Upon release from the hospital they sent me a form with multiple choice to “review” the hospital…little did they know I would attach 10 or 20 extra pages of comments. To their credit, when they received my notes, they actually called me and said they would be dividing my comments up by department and sending them to the department heads with a requirement for them to respond and to my surprise they actually did. They even followed up with me by providing me with the comments. I was so impressed.
My notes to the hospital are below:
UTMB Galveston Review of my stay in the Covid Unit August 24-Sept 3 Lori Considine
Review shown first is from my experience at UTMB Galveston, below that is a
is a short review of my experience at UTMB in Angleton prior to being transferred to Galveston.
- NURSES: I was so blessed by the compassion and attentiveness of the nurses as a whole. A few stood out as exceptional. Theresa, who listened intently when I had concerns and did not make me feel like a mere number on her list of things to do but made me feel like someone really cared if I got better or not and it made a world of difference to me. Bianca with her sunny and cheerful disposition and genuine interest in how I was feeling. Then, and I forgot her name, she had a few tattoos, and had more compassion than one person usually has. She was a light in the darkness. Please understand, these were not the only ones who were great but they did stand out. The nursing during my stay can all be counted among those we call hero’s.
Tim—I’m actually not sure if Tim is a nurse (he may have been with Respiratory) but of the MANY IV’s I had to have during my stay (and my lifetime) Tim was the best. He had to use the ultrasound to find the ONE vein that could be accessed. This is an ongoing issue for me for many years and TIM DID an OUTSTANDNG job at getting the IV in without unnecessary discomfort and he was enjoyable to be around while he did it.
- THERAPY: Occupational Therapy: D. Michelle Evans, OTR was friendly, compassionate and professional. She took time to perform her task regarding my evaluation and was attentive and informative to my questions. She explained why OT was ordered and what impact it would eventually have on my discharge, I appreciated that.
Physical Therapy: Arvin Calamba, PT , was professional, knowledgeable and in speaking to him I felt confident that he was not only excellent at his job but probably excellent at everything in life. I was so impressed by this young man not just for his interaction with me on this date but sometimes you meet people, and you just know they are really high caliber, trustworthy, dependable and honorable. That is the impression I got from Arvin. - HOUSEKEEPING: I was SO IMPRESSED with literally every person who came to clean the room, each one was friendly and kind and SO DETAIL ORIENTED… I am a tad OCD with cleaning and there were little things that were bugging me but certainly were not cleanliness issues. For example, a smudge on the tv that was literally almost unnoticeable and yet the cleaning person saw it and cleaned the screen. Another one took the time to even wipe down the marker by the wipe board and still another one impressed me with how not one surface went without her attention. One day the cleaning person was a male and even as impressed as I was with all the females this guy was AMAZING… I literally wanted to hug him for being so thorough.
- Dr. Chandani Patel was very professional and presented facts and prognosis in a no frills manner which semi-scared me half to death upon initial visit but on second visit was more personable and relaxed making it easier to process what she was telling me. First impression was a bit stoic, but 2nd and 3rd impression told me that she is either already someone to watch for her strides in medicine or she will be. I will say that her first comment after the one about Covid was about my weight. Once someone is already in acute respiratory distress it really doesn’t solve any current issues to point out the obvious. If you want to make an issue of someone’s weight it is well before an episode, not after and certainly not when someone is fighting for every breath. The comments about my weight may have been better timed when I was being released rather than during the worst of my distress when I was fighting for every breath.
- REMDESIVIR: As I understand it, a typical cycle of this drug is 5 days. I received 10 days which I think contributed to my post-hospitalization need for oxygen. If a typical round is 5 days, why was I given 10 days and how come no one even attempted to discuss this with me? Not a single mention of any of it. I refused the drug on day 3 or 4 and didn’t realize they were still pushing it into my IV till day 8 and the doctor told me he understood that I had a concern but never understood that I was actually refusing it.
- PRESCRIPTION MEDS: The nurses kept trying to give me Gabapentin. That is not a drug I normally take so I didn’t know what every single day they tried to give it to me. I kept telling them to take it off my chart, I didn’t want it but every day they tried to give it to me again. This was just ONE of the many drugs they tried to give me that I refused and not one person ever explained why I needed them..even when I asked very specifically.
In addition to this drug, I actually do take Hydroxyzine for itching as needed but I only take it at night about every 3-5 days because it knocks me out but on more than one occasion it was given to me mid-day and I refused. The problem is, when I said I didn’t want it, they could just leave it for me for a few hours later when it was evening, and I was told they are not allowed to do that. One nurse threw the pill in the trash. So wasteful, and I’m probably being charged for that.
Another time the respiratory person came in the room and gave me an inhaler treatment then left the next inhaler on the tray table. If they can leave an inhaler for half a day, why couldn’t they leave a single simple pill for itching for 2-3 hours? When it came time for the next inhaler treatment no one could find the inhaler and one nurse accidentally locked the cabinet they usually stored it in so when it was time for that treatment, I missed it because it couldn’t be found, and the cabinet was now locked and no one could figure out the code. I also missed the next one for the same reason and finally a nurse showed up with the re-ordered inhaler and said the reorder had been misplaced at the nurse’s station. Again, was I charged for all these missed doses?
This is not necessarily a prescription med but suddenly I was being tested for my blood sugar level every day multiple times per day. I AM NOT DIABETIC. I told them this. I asked multiple people why I was suddenly being tested for diabetes. Everyone kept telling me it was because of the steroids but upon arriving home I discovered it was side effect of the Remdesivir. Would it really have been so hard for someone ANYONE to have explained the reason for the diabetic testing? I also tried to refuse the testing to no avail. - PREEXISITNG CONDITIONS: I find it interesting that when I asked about problems I was having as they related to pre-existing conditions including, but not limited to, a spinal cord injury, neuropathy, pitting edema and others I was told again and again that they were ONLY addressing my COVID/Respiratory problem…but by Day 9 the Covid and the Pre-Existing Issues were fighting for first place in the game of what hurts the most. The Covid protocols did not leave room for adjustment for my spinal cord injury and its related limitations. I did see that my other issues were noted in my chart but upon mentioning them in person I felt like they were again and again dismissed without comment. (I also just had shoulder surgery 3 weeks ago).
- BEYOND THE COVID PROTOCAL: I have a C1-C7 spinal fusion after a collapsed spinal cord injury which is the cause of much swelling and nerve damage on my whole left side, but on nearly every line item it says “Morbid Obesity” and “Acute Hypoxic Respiratory Failure”. I think if you are going to be the best you can be at something including something as major as this would be a no brainer to make note of it right up there with Obesity and Thiamine deficiency. Doctors and nurses kept coming in and telling me to pronate but my head does not swivel left or right or up or down, so pronate to me meant face plant which is difficult with oxygen mask and the need to breathe. Not one doctor offered suggestion as to how to accommodate for this inability. Furthermore, I saw noted on my chart a Thiamine Deficiency and thought it interesting that not one person ever brought that up but literally every doctor made mention of my weight. When I searched the effects of the Thiamine deficiency it could very likely be the cause of a lot of my issues. Again, I realize I was admitted for Covid care, but would it really kill a person to make mention of something you thought it obvious enough to note in bold in my chart? I mean, every doctor who came in my room pointed out that I was overweight, it seems like they may have mentioned a vitamin deficiency they thought enough of to make a bold note on my chart?
- DNR: I did appreciate that my DNR was respected. At some point I heard someone say that the reason I had not been moved to ICU was because there was nothing that could be done in ICU that you couldn’t do on the Covid Unit because of my DNR and refusal of Intubation. Thank you. At some point one of the doctors also came in to clarify just how far I wanted to go with that no intubation order even specifying the use of a CPAP machine. Again, THANK YOU. I appreciate that the choice was mine to make. I did agree to Cpap, but my chart says I refused Cpap. Also Dr. Nguyen asked me repeatedly if I would like to redact my DNR and be moved to ICU so they could put me on a ventilator. This seems unethical.
- PILLOWS AND BLANKETS: WHAT in the world is the issues with pillows? Because I was trying to lay on my stomach to drain my lungs, I asked for a couple extra pillows to prop myself up so I could be face down and still breathe..you’d think they were made of gold and traded publicly for world peace. I asked nurses and respiratory people and who knows who else, but after 2 days of asking, Tim, arrived with extra pillows and it made all the difference.
- Food: I am a (mostly) vegetarian so most of the daily “specials” were not an option for me, so I often opted for options from the back of the menu. No problem, I expect that. There were 3 fruits that were fresh the banana, apple and orange. The bananas were extra green, no problem, I just held onto it a few days till it was good, the apple when I bit into it was 100% brown on the inside. Still, no problem; these things happen sometimes. I wasn’t hungry anyway. The chef salad was excellent as well as the plate with the hummus, but almost everything else I ordered came pre-packaged. It was all good but you’d think a hospital would aim a little higher than prepackaged foods. On 2 occasions my food never came, and I finally called and was told that if I didn’t order hot food, it may be sitting outside my door waiting for someone to bring it in and all I needed to do was ask for it. That’s fine, I totally get it, limit the number of people being exposed and the hassle of putting on PPE, but tell people that’s what’s happening so they don’t spend all night waiting. No big deal, I was never actually hungry but I’m guessing other patients might benefit from the heads up.
- GREATEST MEDICAL PROFESSIONAL EVER: On Wednesday the 25th of August (I think that’s when it was) I had a particularly bad episode and while there were multiple people in the room, one of the people who came into the room said: “They brought her in here too late, she probably only has a 10% chance of survival” another voice in the room said something about 15%. Still another said something about early stage organ failure. I was literally at the end of what I thought I could do to stay alive, I really didn’t think I had one more breath left in me…and all of those discouraging remarks just added fuel to the fire that was consuming me. If I only had a 10% chance to live, I may have wanted to know, but not during a time of extreme distress when fighting for the next breath was all I could do. As medical professional I hope you will ALL consider the great art of TIMING what you will say as well as WHAT you will say. I should add that in this moment one sweet nurse (I am guessing she was a nurse, I don’t actually know) was outstanding. In the midst of all the chaos…
She leaned in close to me and whispered: “You are not dying here today. People come here not as bad as you and they don’t make it; but you are not one of them. Ignore everything in this room right now and let’s get through this momentary crisis. You listen to me, breathe… breathe… breathe”.
She held my hand and just spoke quietly coaching me to breathe and to calm my inner insanity. She encouraged me to release negativity in the room and accept life. Slowly the beeps and whistles found their cadence and the other doctors began to peel away, but she remained. I don’t know who she was, I don’t know if she had been back but if there is one thing to attribute to not dying that day it is that one still calm reassuring voice that was willing to stay and hold my hand and help me hang on.
Find her, give her a thousand raises…in the hospital we need medical treatment, but we also need those people who are willing to recognize that medicine can only take you so far.
The nurses on the Covid unit during my stay were exceptional and outstanding except for the single nurse who said I was in organ failure as I was fighting for breath, she also noted the next day that I looked like a mess. She is the one exception to the superior and outstanding group of people who are nurses for UTMB. I will even say they are the true hero’s at UTMB.
- LASIX: My chart says I refused Lasix. Lets take a minute and expand on that. I DID NOT REFUSE LASIX. I asked Dr. Nguyen for more information about how Lasix would affect me because I was concerned about being up and down and out of breath constantly ALL DAY. Had Dr. Nguyen taken 60 seconds to tell me what to expect from Lasix it would have calmed my fears exponentially and made for a much smoother transition to the next phase of my care. Had I known that the effect of Lasix would kick in immediately and last only an hour or two would have made a WORLD of difference. I really thought Lasix would cause me to be up and own every 15 minutes for 10 hours. The next day, after googling Lasix on my own and calming my own fears, they started Lasix at 9am..right when the doctors were coming by and breakfast being delivered and nurses coming in, and there I am trying to get to the bathroom while strategically avoiding being seen from the hall hobbling and around and panting like an injured animal. I requested that they pause till after the morning rush so I wouldn’t have to be trying to get to the bathroom every time someone came in the room.
A little note of suggestion, if you are going to give someone Lasix, consider timing during a part of the day when you don’t expect the highest number of intrusions and also as an act of kindness and mercy maybe close the blinds for an hour or two to allow patient privacy for restroom breaks when possible. - AMA:
Dr. Nguyen writes: “Notified by nursing staff that the patient was insisting on leaving today.”
This is semi-accurate. I asked what would change in my care over the long holiday weekend and was told NOTHING. I was told that I had completed all medication for Covid and Steroids that had been prescribed for me and that the weekend would be for precaution and safety so I could be re-evaluated on Tuesday when everyone returned. So basically, I felt like I was just being kept for no specific reason except to be re-evaluated on Tuesday, meanwhile, no one would address the new issues developing like extreme pain in my hips and shoulders and neuro pain from my neck injury and developing tremors and numbness in my hands and feet.
Dr. Nguyen said: “Discussed with her that there was never a planned or set date of discharge on multiple occasions and that her discharge depended on the ability of our team to safely wean her oxygen requirements to a setting low enough to be continued at home.”
This is accurate…but after going 7 hours the day before with no response to the issue I’d had with my oxygen I wasn’t feeling confident that any problems I had over the weekend would be addressed any better at the hospital than at home.
Dr. Nguyen said: “She insisted that she feels fine enough to be at home and states that her other medical conditions (back pain, neck pain, cold fingers) were flaring while she remains in the hospital.”
This is accurate but leaves out the part where I asked what if anything should I be concerned about going home, what pitfalls could be expected so I could weigh whether or not I was making a good call for my own care. Dr. Nguyen had no response to this question other than to say that was why he did not recommend going home, all while still ignoring my other issues developing rapidly. Maybe it’s just me, maybe having a spinal issue is no big deal. Maybe I made it all up, except I didn’t.
Dr Nguyen said: “I counseled her regarding the risks of leaving the hospital especially since she failed her 6min walk (desatted to 82% from just standing up on 2L for <1min), and that despite some improvement over the past 24 hours, our team did not feel comfortable safely discharging her in her current state.”
This is accurate but again, neither before or after the 6-minute walk test did anyone explain what the 6-minute walk test was for or what the goal was so when the nurse came in, I treated it like the physical therapy visits trying to stretch my limits.
Dr. Nguyen states: “Additionally throughout her stay, she has been counseled multiple times regarding her need for isolation of 20 days after initial positive COVID result due to the severity of her infection and the very strong recommendation for her and her family to be vaccinated.”
Good grief, he did not council me regarding this issue he practically beat me over the head with it every chance he got. For the love of all things good and right what did I ever say to make anyone think I would risk the health of my friends and family? I live only with my husband, and we are literally 20 miles into the woods away from our friends, who I would NEVER expose. It is unnecessary for Dr. Nguyen to continue to beat a dead horse. I get it, the world gets it, let it go already.
Dr. Nguyen states: “She adamantly insisted that she wanted no part of the COVID-19 vaccination discussion.”
This is accurate because every time he came in my room he harassed me about the vaccine. LET IT GO ALREADY. I am not against the vaccine for the reasons he is labeling me with. I merely am not inclined to be part of the initial rush in favor of seeing how this next season goes for people who elected to get the vax and again, I am super sensitive to pharmaceuticals in general, so my apprehension is warranted.
Dr Nguyen states: “She acknowledged that she needs oxygen and requested we supply her with oxygen. Told her that our team would submit an application to supply her with home O2 despite her signing the papers to leave against medical advice.”
This is the part that really gets under my skin. Dr. Nguyen came into my room telling me he would order oxygen for me but not because he was required to. He was doing it as a favor to me. He stated that I signed the AMA and that after that he was not required to help me with anything at all. His general overall tone said: “I don’t care about you, your health or anything related to you, and you are little more than a pain to me that I can’t wait to be rid of.” Later, I found out it was actually the nurse who ordered home oxygen, not Dr. Nguyen as he had taken credit for in the notes.
If I had to attribute my decision to leave on just one factor it would be my diminishing distrust of Dr. Nguyens attentiveness to my care. Repeatedly throughout my stay Dr. Nguyen treated me like we were in some kind of hostage situation creating a distrust that I was receiving the best care for me as an individual. At no point did I believe Dr. Nguyen had my best interest in mind.
(More on Dr. Christopher Nguyen below) - Charity Funded? Why does all my paperwork say charity funded and one entry says indigent? I am not a charity case. I am not indigent. I am covered. As of the writing of this statement my balance with UTMB is zero.
- RESPITORY: Finally, the ONLY dim light of my stay.
Dr. Christopher Nguyen, Internal Medicine
(The following statements are based on my personal experience and my personal opinion and should not be considered a reflection of how this doctor might be with other patients or other people, I would not be privy to that kind of intel)
A. Dr. Nguyen was openly hostile regarding vaccination preference. Furthermore, he noted that I adamantly refused, which is NOT accurate. What I said was that I was in no hurry; due to the loss of someone close to me after their vax, I was apprehensive to be first in line. I want to wait a bit and make sure there are no longer term issues with people who vaxxed early. He was like a dog with a bone and would not let it go repeating his opinion on the subject nearly every day.
B. Dr. Nguyen was the least personable person I encountered during my entire visit to UTMB..or any medical situation ever.
C. Dr. Nguyen repeatedly insisted on speaking to me from a vantage point in the room where I could not see him which made it difficult to understand him. He said it was protocol to protect himself. I was happy to accommodate that preference and ask if he could at least stand over by the door which was twice the distance but where I could still see him and he refused..and wasn’t even nice about it.
D. When ordering Lasix, Dr. Nguyen didn’t even bother to come in the room, he just stuck his head in and kind of barked that he was ordering Lasix and then closed the door before I had a chance to ask any questions. I had to call a nurse to ask questions…who then sent Dr. Aboueisha. When he did finally come back in the room he failed to articulate what to expect even after I asked multiple times. The short walk caused me to D-Sat to the 60s and it took a while to recover. If Dr. Nguyen had paused for 3 minutes and explained what to expect it would have alleviated MANY of my fears and made my treatment SO MUCH easier. A google search revealed a MUCH smaller window of discomfort than I anticipated. Thank goodness for google since the doctor was useless.
E. Upon request for discharge Dr. Nguyen responded very hostile. Not merely rude but actually hostile.
F. Upon request for discharge Dr. Nguyen failed to adequately explain about the need for oxygen on the way home. I was under the impression that no matter when or by what method I went home it would be without oxygen and that once I arrived home it would be delivered for me. The oxygen company explained that if I had stayed till Saturday morning they would have delivered the portable oxygen to the hospital for the ride home. That would have been MUCH preferred to going home without oxygen at all..but my God is faithful and merciful and I made it home with no emergency issues…and no thanks to Dr. Nguyen.
G. Had Dr. Nguyen not been so apathetic overall it would have made for a MUCH better experience both on a personal level but also on a medical level as well. Never underestimate the benefit of a good bedside manner, something I suspect Dr. Nguyen knows nothing about.
H. Dr. Nguyen noted in my chart: “Requested Ivermectin and Vitamin therapy, counseled on the lack of evidence regarding these therapies.” This is also inaccurate. I did not request Ivermectin, I asked for an explanation of how Ivermectin and Hydroxychloroquine was different from the Remdesivir I was getting and how they were different and what to expect. Dr. Nguyen never let the conversation get to a point where I could request ANYTHING. I am not the kind of person who blindly does what the doctor says, in order to be at peace I need to feel confident that the doctor taking care of me understands my fears and issues as they relate to me specifically. Dr. Nguyen did not give me the assurance that I was an individual but rather, I was under the impression that he was following a list of “Things to Do” as it applied to the general public in a rubber stamp type manner. I still had questions when he left the room. I also asked for info about the Remdesivir, and it was never provided.
I. Dr Nguyen acted like he did me a favor by ordering home oxygen because I was leaving AMA. If you don’t care if a patient lives or dies then you shouldn’t be in medicine to begin with.
J. After checking with friends who stayed at UTMB and other area hospitals I learned that other patients were released with paperwork about the use of the Spirometer, weening off oxygen, general info about Covid (which a nurse gave me-but is VERY GENERIC) and tips about Do’s and Don’t’s. I did not receive ANY of this information. No one told me how many times a day and for how long to use the Spirometer or what it was for post hospitalization. No one told me to follow up with my regular doctor. No one told me ANYTHING about the oxygen or meds that would make my transition easier..NOTHING.. basically just “Oh you are leaving AMA, then I don’t care about you”. (with the exception of the nurse, Theresa, who was phenomenal and did what I think must have been everything possible to help me transition including telling me there were two emergency clinics on my route home in case there were problems) Thank goodness for Google and Social Media to fill in the blanks left by the inadequate Dr. Nguyen.
Dr. Aboueisha, Aesha: I am so appreciative for Dr. Aboueisha. Each time she came into the room she took time to answer my questions and calm my fears and outline the next changes to be expected or anticipated. I wish I had seen more of her and less of Dr. Nguyen. I think it would have made a world of difference on multiple levels. I believe she did know I had friction with Dr. Nguyen but continued to let him be the one to come in each morning. Overall, the doctors seemed to care more about following the protocol than about individual treatment based on a person’s unique needs.
Adam-I only saw Adam twice. Adam was professional but not without an air of extreme arrogance. He presented as young and intelligent, and I have no doubt that he will soar above his peers professionally, but it should be noted that his human interaction skills could use a LOT OF WORK. I actually thought he could be high functioning somewhere on the autism scale. That may be a bit of a stretch..but in the moment, it is what I was thinking. Later a nurse told me that he was very smart and was actually going to switch to a teaching position and that he was a bit of a nerd..which made perfect sense. I think he would be much better suited to teaching than patient care. When he came into my room, I asked several questions, and he basically just brushed me off and left.
OXYGEN/OTHER NOTES: on 9-3-21 at 2pm there was an issue with the high flow oxygen and I called for help to fix it. A nurse came immediately and said she needed someone with respiratory to come fix it. I had to disconnect the hose and just hold it in my lap and breathe the oxygen that way because putting the canula back in my nose caused the pressure to be unbearable. I sat like that for several hours. No one came. I called 4 more times before the 7pm shift change. No one came. FINALLLY at 8:30 the nicest, kindest respiratory person came and in 60 seconds fixed the problem and promised to come back and check on me later in the night. She did come back later in the night and switched me to just regular oxygen and I was surprised to find it easier to manage than the high flow and was very encouraged that somewhere in my future life breathing might get easier. How come no one tried just regular oxygen before? Why were they pushing high flow and still insisting that I needed to be on the ventilator? I realize I am WAY outside my field of knowledge, but I suspect that I could have ratcheted down from the high flow slightly sooner and been more comfortable. (She may have been Sonya Rollins?) She was my angel that day.
SATURATION/OTHER NOTES: When nursing staff would come in to take vitals the numbers never matched what was on the monitor in my room, when I pointed it out some of the nurses would then plug into the monitor that was applied to my forehead rather than their finger monitor they brought in with them. . If there are two ways to measure at the same time and you get two different numbers there is a problem. So when I see on my chart that I had a resting rate of 80% but I know for a fact that these numbers are all flawed it’s hard to trust the notes in the chart. My oxygen did dip very low when I got out of bed to use the RR or was in the middle of a coughing episode…otherwise these numbers reflected in my chart cannot be relied on as accurate. In fact, much of what I read in the chart was written vastly different from the reality as I saw it and had noted in my own notes.