I wanted to update you on my recent experience with COVID-19, pneumonia, and healthcare. I tested positive for COVID 20 days ago and remain symptomatic with cough, fever, chills, and body aches. After 3.5 days of Paxlovid (halted due to drug interactions), I completed five days of Molnupiravir (antiviral) and eight days of Augmentin (antibiotics).
A visit to the Emergency Department two nights ago confirmed both COVID and pneumonia. They prescribed two new antibiotics and same-night I was release. Contrary to my expectations, I wasn't considered a critical patient despite a heart rate of 120 and blood pressure 30 points above normal. The decision was based on oxygen levels (96) and temperature (99.9).
My wife raised concerns about my worsening condition, but medical staff adhered to rigid criteria, emphasizing specific thresholds rather than overall well-being. Shivering during the 8-hour ED stay, I received no specific treatment plan for COVID. Monoclonal antibody or Remdesivir was not offered, and the next suggested step is going back to ED when I am in my death bed.
Considering my age (over 65) and pre-existing Leukemia, and having COVID and pneumonia, it's astonishing that I'm not classified as a critical patient. I'm reaching out to share my experience and would appreciate any thoughts, insights, or advice from the community.
Thank you for your support.
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shazie
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Emergency rooms are overwhelmed - they are currently the treatment site of choice for many b/c it's the one place you can't be turned away for non-payment or non-residency. If your doc or urgent care didn't send you (or an ambulance didn't take you), they aren't likely to accept you through the ER for overnight care unless you are critical (and your numbers, while not good, were not critical).
So, my suggestion - start your new meds and call your doc today (or tomorrow morning if he/she is currently closed), explain your concerns, and see what further care might be possible (in home nursing visit, daily in person doc monitoring visit, etc). You are likely to get more care through your doc and his folks.
If this does nothing, I would go to urgent care if your numbers get any further out of whack and see what they can do for you.
I hope you feel a lot better soon. Remember to hydrate, get fresh air and sun, and try to eat something protein-forward that balances all the hydration.
Thank you for your support. I visited two urgent care units and two EDs. My oncologist's office is not assisting me and suggested returning to the ED if my condition worsens. Unfortunately, my primary care office hasn't responded to my emails or calls. The healthcare situation in my area is truly concerning.
Unfortunately, my old primary care doctor retired last April. He was the best in the business. He returned calls and messages the same day. The new primary is young and most likely not experienced.
I’m sitting here trying to think about how I’d approach the situation you find yourself in presently. Would it be possible to ask to see a Nurse Practitioner at your GP’s office? These folks are often very capable and more importantly they have access to the doctors. At least that would get you in the door and maybe once there you could get a referral to a pulmonologist as SofiaDeo suggests?
It is concerning how overwhelmed the medical system is presently. Unfortunately, you have to be your own advocate which isn’t easy to do when you feel terrible. I hope you are able to access someone who can help you soon.
Sounds like where I live (British Columbia, Canada). I experience similar problems and assumed it's due to an overburdened, underfunded, poorly managed social health care system.
We don’t have social healthcare. We pay $1,200 monthly for health insurance from my wife’s job. There is still another $7,500 for each of us to reach maximum out of pocket. My two visits to ED most probably cost me over $5,000. Money waisted on nothing.
Yes, I understand. I was just saying that I thought the problem where I live is due to poorly managed social health care system. People think our system here is great but it's actually falling apart and there was a huge amount of politics involved in me getting proper care when I was diagnosed with SLL.
FWIW I have never spiked a temp with documented viral, bacterial, and fungal infections since my CLL diagnosis in 2011.
Are you seeing a hem-onc, or a regular oncologist? See if your oncologist or GP will get you an Infectious Disease consult. As well as a Pulmonologist. Hopefully they have experience in treating documented infections in the immune compromised. You say you were given Augmentin, but there's no mention of culture results. Or any imaging studies to see if you have ARDS.
I had a longer course of drugs than "the usual" with MRSA and Candida infections. I also had culture & sensitivity of the MRSA to verify I was on the correct drug.
Yes, I do have a hematologist but they don’t want to be involved in treating COVID or pneumonia. They referred me to urgent care unit and asked me to go to ED if my vitals become critical according to their standard. I had two chest X-Rays and one pet ct scan with contrast at the Emergency department.
Unfortunately, at ED, in my area they don’t differentiate between immunocompromised and other patients. You receive the same exact treatment as everybody else.
I understand a hem-onc not wanting to prescribe treatment, but they should facilitate a consult with Pulmonary and Infectious Disease. The CE activity for physicians regarding COVID-19 in the immune compromised, recommend these specialists be brought in. And it's recommended to have extended antiviral therapy.
When a routine study CT showed ground glass opacities in my lungs, my specialist got me a STAT referral to a pulmonologist. He told me to get a Covid test; I was coughing but that was my main symptom. Your doc should facilitate some specialists for you. Those would be the people to continue to see until infection resolution, not repeat trips to Urgent Care or the ED!
I agree with you but they don’t operate the same way here. I just got off the phone with my hematologist office and they keep telling me go to ED where they can manage for my care..
Isn't there another hospital in your health network? Maybe one connected to a university? Those, being hospitals with a focus on "teaching residents" in a particular field of medicine, might give you more attention and more tests to aid you and the teaching of their resident doctors. I hope you recover from this very soon. 🙂 Sandra
Thank you for your response. I was seen at UCSF (University of California, San Francisco). My hematologist is also from UCSF, but they all give me the same response: I have to wait until my oxygen levels drop below 92 and my temperature rises above 100.4 to be admitted to the hospital. they do not offer any treatment at this point.
shazie, oh, my! If this happened to me, in no time my hyperventilating from being upset would quickly lower my oxygen intake and raise my temperature with a bonus rise in blood pressure. God bless you for remaining calm. You've been told you are alright now, not sick enough to be admitted, well, I pray for you, that you are NEVER sick enough and this passes very soon for you. 🙂 Sandra
You went to UCSF’s ER?! That place is horrific. I went there once and waited 4 hours and still hadn’t seen the triage nurse. I think UCSF gets a ton of people from SF in their ER and is pretty sub-optimal. If you didn’t already have covid, you could easiliy get it waiting there. Perhaps either of the two CPMC hospitals are a bit more civilized.
I think in general, the overwhelming cost of living in this area drives doctors out or away.
The last time I went to an ER in my area it was a horrible experience. I had chest pains. I was prioritized for triage but basically I was left sitting in the waiting room for six hours during which time they took three blood tests. After determining I was not having a heart attack, I was sent home. No suggestion other than possible muscle sprain as to what might be causing my chest pain.
We figured it out in our own (we think) that it was heartburn. I can see a gastroenterologist in May. Heart doctor in November.
I get good health care from my CLL specialist, my dermatologist and at Urgent Care for minor issues. Everything else is very limited.
It is crazy that you can’t get more help for Covid and pneumonia. I don’t know how you are feeling but you should keep checking your oxygen sats at home.
Unfortunately, in my area, at the emergency department (ED), they don’t consider CLL patients as immunocompromised. I've been to two different EDs, and at both locations, they attend primarily to drug overdose patients and similar events before they talk to you. The EDs are overwhelmed with patients without insurance, so regardless of where you go, the wait time is 6-8 hours or more, depending on the time and day of the week. Two of the nurses were complaining to my wife that they see many patients in the ED who shouldn’t be there.
I am in a really bad place if I were to get covid. When my wife died about 21 months ago — I let myself vegetate in despair and depression. So to call me a seriously out of shape 70 year old man is an understatement. Then again I rarely interact with humans as I have no family or friends — just my dear darling dogs (jindo sisters).
I have a PCP, who moved to concierge care in 2024 — with a lot of promises and no follow through. What a waste of money! Paxlovid for Medicare patients is a government run mess of authorizations. My New and Improvrd” PCP” is useless and condescending but the phys. Asst. is better but over loaded. Stanford CLL treatment has not been the same since Steve Coutre died. Coutre was comprehensive, his replacement is hands off (only video for me — 10 minutes every 6 months.
So beware of what you don’t wish for —Covid is generally an afterthought for most people and medical personnel. — at least in the USA anyway. So the best route IMO for us us for each one of us get loud and aggressive if in a covid situation. It does work, but you rapidly become disliked. Good luck.
My husband and I currently live in San Diego and his hematologists advice about Covid is, " Don't get Covid". We've been wanting to move back up to Northern California near Stanford thinking we would get continued excellent care, but hearing what you have said is making us think twice. We also have no family and just a few friends. We researched the senior centers around the Stanford area and they are excellent. So we figured we could find new friends.
Northern California is still good for medical care - mostly. I live in the North Bay (Marin) which IMO is really backwards. I/we lived in the south bay until the mid 90’s. It still is great for a lot of things (including medical care) — if you can afford a minimum of $3-4M for a modest house. The East Bay is not too bad either. .
My initial visit to the Emergency Department (ED) was at Marin Health (now part of UC). They had only one doctor available on a busy Saturday night, and insufficient staff for check-in. It was one of the worst experiences of my life. After waiting for eight hours, I was briefly seen by a young doctor for no more than 10 minutes. Additionally, my wife couldn't find any staff to assist or address our concerns. The Bay Area is not what it once was.
Marin Health is a joke IMO — yes. It’s affiliation with UCSF is unclear to me as it seems to be the primary hospital for Marin specialists. It’s not even clear to me who owns the place. I live just north of Novato In unincorporated Marin. So a 911 call will get me to the local community hospital. I could hand them a briefcase full of cash and they’d never even take me to Marin Health. The local hospital uses mostly “travelers” (i.e.- temps) for ER/ICU staff. I would guess that Marin Health does the same. The medical community is stagnant, growing older, retiring — with likely no one to easily take their place. It costs too much — even in Marin for newer physicians to live here.
I’ve lived in the Bay Area since 1982 - in Palo Alto where I originally met my wife. South Bay was nice — a bit overcrowded after a while. My wife grew up in Palo Alto, so we left as she grew tired of it. We made the stupid mistake of moving to Marin. Even now my CLL care is at Stanford (Bita Fakhri) which involves about 4+ hours of driving if I time it right.
I have lived in this area since 1978. I could never have imagined living elsewhere but now I have my serious doubts about living in the area. The Bay Area has changed dramatically. The landscape is still beautiful, but the people have changed. I'm sure you've heard in the news about all the crimes and homelessness. There are still safe areas in Palo Alto, but they are very expensive to live in. If you decide to move back to the area, Dr. Fakhri at Stanford is fantastic and very caring. She was my hematologist at UCSF and she took the place of the late Dr. Coutre as the head of clinical trials at Stanford.
I'm sorry to hear about your wife. It can be challenging to manage your health without an advocate by your side. Make sure to have an action plan in place beforehand.
I am saddened to hear this; I use the boutique practice service MDVIP and have been pleased with it. If I wasn't spending the $475/quarter for this service, I would likely have problems seeing a primary urgently at a traditional practice. We've got 3-4 people in MDVIP in the city, so someone is always "on call". And at home now, that rural area has grown enough to have an Urgent Care center, so no more waiting around in the ER fir things tgat really shouldn't wait another day.
I told my neighbor with CLL to go to our Urgent Care when he had some alarming symptoms, and to tell them "I am a leukemia patient having some problems; can you do a CBC w/differential."( I don't say "I am immune compromised" I say "I have a leukemia.") Of course, he also presented with massive bruising because his platelets were low. The Urgent Care people coordinated his going to the hospital for a platelet infusion. This took much less time than sitting around the ER, I think he was admitted to the hospital within the hour of going to Urgent Care.
IDK if you have any Urgent Care centers nearby that accept your insurance, or are associated with your primary. If so, you likely will get seen/pulse ox & vitals taken, much sooner than an ER. Instead of going to an ER.
My “concierge Dr” will see me— at least by video initially. In fact I can call in 24/7. The problem is:
1.). They are kind of clueless. Burnt out too.
2.). They avoid doing anything at all costs. The’ll give me phone numbers of specialists to call - but I can get them off the internet. A good Dr should facilitate a referral. I make noise so that they do a crappy facilitation. At least that’s better than nothing.
I expect I will be dumped from the concierge practice at the end of the year. They want the money, but not the hassle. No vacancies in most PCP’s around here. Most concierge Dr’s want ~$10K per year, which I will not pay.
No urgent care facilities I know of county-wide. They all go broke. Again the cost of living and doing business here is too high for what medicine can pay. Kind of a paradox as you would expect the opposite.
Many people cannot afford any of this join HMO’s and get repeatedly ignored. You just can’t win. There are a lot of people here who can afford to live here because they have been here for decades. For medical care — it’s not good.
I have “original Medicare with a top supplemental policy. I have not paid a dime in co-pays in 6 years. I also have a pharmacy Part D policy.
My guess is that Dr’s mostly take Medicare (not “advantage, though), but get such poor reimbursements from CMS that they provide shoddy service. This is California and many people think that anyone over 65 is useless waste. Really!
It’s really difficult to manage as a now single person with no family or friends. I figure I will eventually die of something preventable or treatable — all because of medical indifference. Most covid cases can be managed - especially if ICU care is not needed. You don’t need a hospital to get Paxlovid. But you do need medical care. A regular hospital will make you crazy with sleep deprivation. Best to recover at home - unless you have medical complications. And CLL? A fairly uncommon disease that many practitioners wish to ignore.
I do feel for you. Very alarming. It would seem that you are having to manage your own illness! Living in the UK probably not best placed to advise you. We have our own health care pressures.
Building a good Patient/Dr relationship in Primary Care is essential. Gifting chocolate cookies helps btw! 😉
I was at the ED both times with my wife, who has been working in healthcare for 22 years and is very familiar with how the system operates. However, the healthcare system in this country is currently in disarray. Many good, honest doctors have retired during the pandemic. I am a prime example of why everyone needs to have a plan in case something happens. In my case, I couldn’t tolerate Paxlovid, but there was never any discussion with any of the people in my care team about what to do if Paxlovid failed. They simply prescribed it to me, and I had to figure out all the drug interactions with my other medications. It feels like they just don’t care anymore.
It seems that they've decided not to admit because you have no treatable symptoms. My partner got covid while having his stem cell transplant in hospital. His neutrophils were literally 0, we were waiting for engraftment.
He had a cough and spiked a temperature, but once his fever broke, they weren't concerned about his other symptoms. There comes a point where it is up to your body to do the healing.
Drink fluids, wear a scarf and socks to soothe the cough(sounds counterintuitive but it helps) and take vitamin c. Take note of your temperature and blood pressure every 6 hours or so and call your primary care doctor if you spike a temperature again.
We're in the UK, so our healthcare system is a bit different, but what is global is medical malpractice. I've often encountered medical professionals who simply rather not deal with your concerns because they assume patients are overreacting.
I would agree that high blood pressure and heart rate are not too concerning, as I've seen the extremes the body can handle since taking care of my partner. But you know your body best. Keep track of who you've spoken to and what your symptoms are so you can quickly divulge them to anyone you speak to (and they may be useful if you need to make a complaint later).
Unfortunately there isn't any real treatment for covid and if they are satisfied your pneumonia is resolving on its own, they won't give you a bed. You'd probably just end up with another infection from being in hospital anyway. Get rest and try not to catastrophise. But definitely call your PC doctor if any new symptoms develop.
Sorry you're having to deal with unhelpful and incomplete medical advice while you're feeling poorly. The hospital may have a Patient Liaison Service you can contact to help you get a better understanding of why you've discharged and potentially put you in touch with a more helpful department. Emergency Rooms struggle to cope over the weekends, so you may well get a better response if you go mid-week.
Good advice. As well as monitoring temperature and blood pressure, shazie should keep an eye on blood oxygen saturation. Reasonably accurate oximeters available at drugstores and online.
I sincerely appreciate your response. It's comforting to hear your perspective. Back in November, I had pneumonia, and 5-7 days of Augmentin cleared it up. However, the combination of pneumonia and COVID now is concerning. I tested positive again this morning. Today marks day 21. I am supposed to start my IVIG infusion in two weeks. Hopefully, that would help with future infections.
My partner tested positive for almost 3 months after he had covid, but his cough cleared up after a week or two. His consultant said it will take longer for the virus to leave his body because his immune system doesn't work as efficiently, but once the fever breaks, it's a sign his body has fought the worst of it.
My partner is 38 with CNS lymphoma and CLL, though. Pneumonia is less common in his age group. But if they gave you a chest xray and weren't concerned, try the new antibiotics for a few days and see how you feel. I found that high dose vitamin C helps more than anything when your immune system is overworked.
It is awful that they've discharged you without a clear follow up plan. The US healthcare system is a crime against humanity, on my opinion.
I agree with Sofia, your oncologist should at least be able to refer you to a pulmonologist or an infectious disease specialist and ask that you be seen urgently. My oncologist wanted me to have a second opinion from a nephrologist and I had an appointment within 2 weeks. Interestingly the few times I have been in the ER I was put in a room alone with little or no wait the moment they figured I was in treatment for CLL. Maybe they are more used to it because my cancer center is connected to the hospital. I am wondering also how much insurance companies play a role also in treatment of patients. I ended up in the ER with bp of 247/113, very low potassium, this was right before treatment and I wasn’t in great shape. I was admitted but my insurance company refused to pay because according to them I could have been treated as an outpatient. Yes, we appealed and they paid.
I hope you can get well again without further drama. Here's some info about pneumonia symptoms and indications of recovery medicalnewstoday.com/articl...
My heart hurts for you! I’m reading & eagerly following to see what ideas our friends here can share … my first instinct would be to call my cll specialist team .. ask for Telehealth asap & share all this, ask for help, that you need a plan …
UPDATE: I read thru comments here and love idea of connecting w infectious disease expert asap as your new go to support.
The old CDC guidelines did say for immune compromised, after 20 days antigen positive consult infectious disease expert .. so while CDC has recently pandered to the mob and abdicated their responsibility as ‘center for disease control …’ that footnote is important as some others here are saying.
How about you Specifically point to that prior guideline and ask your team for a referral to an infectious disease specialist right away.?
Maybe keep it simple?
‘My understanding is that immune compromised patients like me who is at Risk for serious disease progression should be connected with an infectious disease specialist if still covid Positive after 20 days … I am still very sick and covid positive after 20 days. The ER is not offering me any support because my BP is not fully elevated & I do not have a fever. . However I a very sick and require help… can you please help me with an immediate referral to an infectious disease specialist?’
Aggression is probably the wrong word. Assertive is better. When you are not well and all on your own, you can’t always be diplomatic.
Polite but assertive. If not, you will be ignored, marginalized, and given no attention. This post pandemic era is really marked by huge gaps in medical care.
Hi- I also have CLL and went to the hospital. They gave me oxygen and Remdesivir. after 2 days sent me home and I got worse. Daughter took care of me then. I was lucky and got over it. that was 2022. it was the bad Covid. Delta. hang in there, sending all best wishes for you. they are very concerned about oxygen saturation. let us all know how you are doing. 68 yr. old male USA
I had the same experience April 2021 & that is why I am a nut about maintaining Covid Protocols. I went to the ER after 1 week of confirmed Covid that morphed into Covid Pneumonia. I had Cipro, Tylenol & a Nebulizer ready as soon as I felt the ‘Sinus Infection’ jump right into my Lungs. I was doing good but by 1 week - I had a 103.8 fever that would not budge & I was producing so much phlegm that my ribs & diaphragm were so tender. I was sure that I was gonna die. It was a Cytokine Storm of Epic Proportions!!! My neighbor pushed for me to go to the ER when all I wanted to do was try to sleep.
The 2 doctors after trying to throw my son out without success, just said they could do nothing, that its just Covid & why didn’t I get the vaccine. I told them that I didn’t get the Memo that it would kill me & that I was there for help. I asked don’t we get treated differently 🤦🏽♀️One convinced me that I did not want to get admitted because all they would do ‘is watch me & not even give me oxygen’. When people tell you the truth, you must listen.
Anywho although they kept pointing my attention to my pulse ox, I demanded a Arterial Blood Gas because I knew I was drowning. They compromised with a Venus Blood Gas & it showed I was hypoxia & in respiratory plus metabolic acidosis. Then they wanted to admit me but I demanded IV Steroids & if it worked, I promised to leave there. It did & I did. I went to NYU the next morning through my son’s doctor’s connection & got the Monoclonal Antibody Therapy because it was within their 10 day time frame.
My local hospital sucks & I filed a complaint. But they still sent me home with Pleurisy 2yrs later after 13 days on Zanubrutinib & I had to return 2 days later with Left Pleural Effusion, Pneumonia vs Aetelectasis. I have been traumatized so that is why I am so into Self Care & Prevention. I take no chances🙌🏾
I am still affected by that delayed treatment, I put on 30lbs & could not workout for 8 months. I can only do 50% of what I could before & I am still on Symbocort so the weight ain’t budging. The weight is affecting my Malunion Left Fracture from 2011, its now Bone on Bone & my Right Foot Arch has Collapsed. But my bloodowork looks normal. Those W&W days were great 🥺
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