My brother is being treated with Remdesivir for the antiviral, he is intubated and 3 days in ICU.
The updates are very vague, "he is comfortable" etc.. I want to know how we can step in if the treatment is just going nowhere and ask for another drug if required. What are my rights as next of kin to request alternative treatments. Thanks to any advice.
I was given Dexamethasone as well as Remdesvir. Dexa does not work for everyone but latest research suggests its saved 1 million lives worldwide.
Its can be a long process and 3 days early days, I was 4 weeks on a ventilator and then a trachy. I recovered after 10 weeks in ICU before transfer to community hospital for 4 weeks physio.
Over a year later I still have fatigue and other issues.
So its a long haul, but worth regular chats with the IVU team to see what possibilities there are. They do everything in best interest of the pt.
Thank you Marty29, The family are in bits with worry about the reports circling that Remdesivir is actually making patients worse. A lot of this came from the interview with Dr McCollogh recently in which he described the benefits of Ivermectin and Monoclonal Antibodies as a treatment protocol. I just don't have the knowledge or case studies to argue it.
Dexa is well known. I know since I was ill with Covid last year there are new treatments. It is a worry, but I know my ICU team did everything possible at the time including proning (turning on front), antibiotics, diallysis. Unfortunately patients respond differently so there is no one treatment fits all.
One is entitled to 2nd and 3rd opinions, but the doctors are not going to be taking instructions from various members of the family.In getting additional opinion, the current treating doctors are under no obligation to take instruction from the doctor giving opinion. If for example, their opinions clashed and the family insisted the course of treatment put forward by the doctor giving opinion be followed, this in all probability may result in a change in medical teams - something that is fraught with complications and potential problems.
But please don't feel I'm discouraging 2nd opinion, I'm not. In fact I usually advocate patients (or family) obtain 2nd opinion if there is anything giving them doubt that cannot be adequately explained by the current attending medical team.
Of Ivermectin. Don't go down that path. Thus far clinical trials for its use in treating covid have been woefully inadequate, peppered with plagiarism and fictitious numbers. Even it's manufacturer Merck, reject its use in the treatment of Covid:
merck.com/news/merck-statem...
The doctor you quoted advocating is use has also been thoroughly discredited. A simple Google search should be enough.
However, don't for a minute gain the impression I'm a cheerleader for "Big Pharma". I'm not.
Were some "hippychick" with unshaven legs and underarms wearing a tie dyed dress come up with a dance under a dream catcher whilst waving about various crystals, happen upon a magical treatment that works, then to all I would say "go for it". I'm very much in favour of alternate treatments (for various conditions), but Ivermectin is not one of them.
As a Perfusionist involved with the treatment of patients on ECMO, I fully understand and can empathise with your feelings of frustration, desperation and helplessness - I see it constantly, and it's heartbreaking to witness the pain the families of loved ones in ICU are subjected to as a result of this insidious virus.
Above all, look after your own health right now, your brother needs you to remain in peak condition while you advocate on his behalf.
Do your research and explore, but avoid Facebook and WhatsApp groups that are generally antivaxx and pro Ivermectin. There is an abundance of globally well respected institutions (John's Hopkins, Mayo Clinic etc) that have a wealth of information available.
From time to time I make "unorthodox" suggestions, but these come out of personal experience.
So another one - if you are having difficulty in getting to talk to the doctor leading your brother's medical team, try figure out when he leaves the hospital each day. Then get your timing right to "bump into him" on his way out of the hospital and try chat to him. You will generally find the doctors a little more relaxed out of the ICU setting where they are constantly juggling patients. Don't try question him tho, simply thank him for his efforts - leave every aspect of treatment out of any conversation. What is really happening is you are resetting the relationship out of the formal clinical setting to one a little more informal and personal.
"Social conventions" of reciprocation often come into play, and with that, you may experience a different clinical interaction.
There is no harm in thanking a doctor out of the hospital environment - provided you limit it to just that. It will be appreciated by the doctor as he makes his way home to relax with his family.
"The doctor you quoted advocating is use has also been thoroughly discredited." Where is the peer reviewed evidence for this statement? Please post a link to the article or papers.
There is plenty out there about him spreading false information.A very quick Google produced this instantly :
factcheck.afp.com/us-cardio...
factcheck.afp.com/http%253A...
medpagetoday.com/special-re...
There is not even need for peer review when someone spreads this level of disinformation.
Here you have someone pushing anti malarials and mule dewormer, someone who claims once a patient had had covid they then have lifetime immunity - and other assorted drivel.
That doctors often disagree on various issues is a good thing - this leads to further investigation and research. But when certain things have been proven and others disproven, and a medic stubbornly clings to a misleading narrative, then there is a problem.
Be that as it may, this is not the forum to discuss the likes of Ivermectin & Hydroxychloroquine - both of which are touted for prophylactic purposes, not deployment in an ICU setting.
So you have no actual evidence then? Just results from google, and an opinion piece. I started this thread, I'll be the judge of what is relevant here. If you have data to present then do so, otherwise I think you have made your points and we can all make an assessment on whether they represent anything useful in terms of information. Many thanks.
Are you U.K. based? I only know U.K. health system. My family & my experience has been that the hospital teams are very open to discussion & are eager to include the family’s & patient’s wishes in any treatment plan.
If the relationship & trust has vanished ( which is unlikely) you can request a second opinion if you believe that the treatment plan is flawed for some reason. It is not necessarily agreed to by the Trust.
Yes we are in UK, my brother is in an NHS general hospital ICU. Thank you for that advice, I am just gathering info at moment trying to cover bases, but I also have nothing but admiration for the doctors and nurses on the front line, its just the general protocol I am wary of in light of recent information.
There is always PALS that you can contact at the hospital. They are the go between for relatives if you have an issue or possibly if you want to clarify any formal procedures before speaking with the doctors etc.
Just to let you know that my husband was given Dexamethasone and Remdesivir and did really well with them. Slightly different circumstances to your family member as my husband caught covid after already being critically ill for a fairly long period of time so was too weak for ventilation. Luckily plenty of oxygen and medication helped him to pull through but it was touch and go for a while.
Unfortunately a lot of updates from ICU are quite vague as patients don't tend to change much from day to day. I found nurses to be a little more informative and generally spoke to a doctor every 3 days or so or unless there was something major happening. Although not giving much medical information, I felt that the nurses noticed little things more and were able to tell me about small changes. I hope your brother starts to make some improvements and that you find the answers that you are looking for x
Thank you so much, we are in a really frightened place right now but everyone is being so helpful and I really appreciate the shared experiences. I had an update earlier today and i asked for the meds being administered. I was told this time that my brother is not getting any anti viral at all, not sure why I was told Remdesivir by the doctor when I visited.
This is the list I was given:
Dexamethasone a type of medicine called a steroid (corticosteroid).Enoxaparin is an anticoagulant that helps prevent the formation of blood clots
Tazocin (piperacillin/tazobactam) is used to treat a wide range of infections.
Today they tried to withdraw sedation to see if he could tolerate it but they had to go back to ventilation and sedation, they say they will attempt to withdraw sedation again tomorrow.
The waiting is unbearable but I know I have to get used to it, we are all trying to be positive.
Thanks all who replied.
Please don't be despondent about the sedation hold not working, they tried scores of times with my husband . He was in the first wave when they were unsure how to treat it .
Eventually it did work , your brother hasn't been on the ventilator that long. It's a challenging journey and you will feel incredibly lost along the way. We are all here for you .
It seems your brother is on similar meds to me last year. I was sedated for about 4 weeks while on a ventilator before being eased off, so dont be surprised at length of time your brother may receive this treatment. The doctors and nurses were good at liasing with my family good or bad news.
Hope your brother responds soon.
There are a few links on this page which will give you an idea of what’s in store for you & your brother cc-sn.org/information
I'm not sure about medication wise as my partner was in icu with sepsis but I got really worried when they kept telling me he was stable and there's no change. I had been able to visit and it was 3 days between visits and I was pulling my hair out thinking something must have changed in 3 days and it felt like there were things I wasn't being told but when I saw him again nothing had changed he was the same and was comfortable. I'm just hoping to provide some reassuranc. I hope all goes well and agree with contacting the patient advice and liaison service for more information and as a go between.
Thank you leafety, The replies on this thread are really helping the family just to get a sense of what is happening. It means a lot to us. I just got a late missed call, same situation when I called back, no changes just sleeping and I hope healing.
The anticipation of your phone ringing can be horrible, my phone went everywhere with me and when it rang I felt my heart sink especially if it was in the night. I think it will carry on until he comes home. As someone mentioned the critical care support network are great they are on Facebook and have family and relatives zoom sessions on a Tuesday evening where you can talk to people in the same situation so they may be able provide some support.
I know its easier said than done but don't forget to look after yourselves aswell
So the last update we have is that things have not changed significantly, still sedated and intubated. The blood oxygen level is at 40% which I think is positive but that metric being used is really confusing, when I visited I was told that lower was better, i.e my brother needed less from the ventilator to get his oxygen level at the correct number. Today we were asked if a third party could have his DNA profile in order to do research on what makes some patients more susceptible to infection. This would mean his genome would be available to said third party for all future research. A tough call indeed. We are still struggling to get regular updates, the call times vary wildly from early morning till very late and we are raising this with the PALS service to see if we can get a more regular update.
The oxygen levels :There are two components that get tossed about, often causing confusion.
The most commonly mentioned "oxygen level is the sp02 level - this is the level of oxygen suturation in blood - this will always appear on a bedside patient monitor screen, along with other vitals.
The higher the level, the better.
The 40% mentioned, is probably the oxygen concentration level being supplied by a ventilator to the lungs. These readings are on the ventilator's screen.
The lower the level the better.
When my partner was admitted they went through loads of different infections and sometimes its a case of more symptoms show more possibilities for infection, my partner was in itu for 2 weeks before they found out caused the sepsis and that was because other organs that didn't fit the usual sepsis profile came to light such as his liver and he was having pain in his legs which isn't really normal, they tested for various hepatitis conditions as well as hanta virus and leptospirosis. A week after the tests the consultant said that they had tested for all sorts of weird and wonderful things and they had come back negative, then the next visit he had come back positive for leptospirosis. It took over 2 weeks. I am sure they are doing their best and the nurses said to ring every day for updates they even said to ring several times a day if needed. They even said if you wake up in the night and worry then to ring and see how he is to put your mind at ease. It can take time for cultures and things to come back.
With the oxygen I was told that the normal air we breath is 20% oxygen so they concentrate it for those who need a higher concentration.
My father was in intensive care on a ventilator this summer for 5 weeks. I really struggled with not being able to visit him and the vague updates. I appreciated the doctors were busy, saving lives, but we as family members need more feedback than ‘he’s comfortable’. It was a steep learning curve but everyday when I would call for an update from a doctor, I would ask what markers the doctors were using to determine my father’s progress, and once I learned these - like for his sepsis - what his inflammatory markers were everyday? What his CRP was daily? What his infection levels / blood pressure/ any temperatures/ what antibiotics he was on (these would change almost daily sometimes as seemed to be trial and error) - I would then log each marker and ask for an update on that the next day. Most doctors were helpful but to be honest some doctors & nurses were very stroppy - so don’t be put off.! They may make you feel like a nuisance but you are just a caring relative - desperate, at your wits end - as I was! I also requested a weekly face to face with a consultant. This was not always easy and some weeks I would just turn up at the hospital (where I had been unable to make an advance appointment with them) and ask to see the consultant - and each time they would see me . I appreciated fully that they were busy BUT when they’re telling me my father might not make it, I needed to know that all avenues were being explored and that they weren’t giving up on him. I kept a daily diary of his ventilator settings and when they were finally weaning him after the tracheotomy. Remember to Ask them any questions you want, query any research findings you have that may question their treatment plan- seek the answers so to be as reassured as you can be. It was a scary, bumpy road, and many times we were told to expect the worst - but he pulled through!
The days can feel very long, as you will for tomorrow to come, in need of the next update, with hope of good news! Take care and I sincerely hope your brother pulls through.
And I used PALS too.
Thank you so much Lisa, this is really useful advice and I appreciate the good wishes. We are talking to PALS and have put forward some of our questions and concerns around communication issues we are having. There has been conflicting information, and generalised statements using language like "Oxygen is ok" which is causing us to become more concerned that we are not being given an accurate picture. We are 6 days in now and we still have not found out what is causing the infection. Let's hope PALS can get some more solid data for us.
Hi. When first admitted I had an infection and sepsis. I know the source of the infection took a while to establish , although early on there were clues. After test including back drain, I had a number of sources. I was 4 days before being transfered to ICU and 4 weeks in ICU before recovery and transfer to a ward. Then I contracted Covid and back in ICU as detailed in earlier replies. My view is there are no instant answers, yes it was quickly identified I had an infection and was seriously ill, but it took a while to conclude the exact cause. The information provided to my family was as much as the doctors knew at the time, and they always welcomed follow up calls with any further questions. Its been useful for me to have my hospital record and all the clinical notes and I can see all the efforts made to keep me going.
Hey Marty29, Thank you, that profile is in line with what we are being told although the Doctor I spoke to said the bloodwork was not matching the existing parameters of what they look for in Covid. Given that there is a new strain doing the rounds I understand the doctors may not have all the answers quickly. The ICU team is fantastic and although communications are not great we understand and appreciate they want to deliver facts and not speculation. Thank god we have our NHS.
Agreed the NHS are fantastic. It must be so difficult to treat ICU patients, they have my eternal thanks......I certainly had my monies worth.... I hope your brother shows progress soon.
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