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Thanks to all !! You guys and gals have no idea what the support here means to us. Since this isn't a controlled trial, we may never know if the LL helped my wife. Anecdotally I can say this. Yesterday when the doc told me she had a hole in her lung from the vent pressure, he said that the injury indicated that her lungs were weaker than we thought and it would probably be a longer timeframe for her to get off the vent. Today she did 2 hours on her own and they plan another breathing trial tomorrow. Her o2 sats are improving as well. Im just throwing it out there, not making any claims.
Leronlimab day 6 for my wife today, and she's been doing better. While still pretty foggy shes been more alert and occasionally able to respond to nurse commands in spite of being sedated and on fentanyl for pain. Yesterday her doc told me she had a hole in one lung, commonly called ventilator associated lung injury. Put in a chest tube. Today he says x-ray indicates its resolving on its own, which was expected. Best news is she just spent 2 hrs breathing on her own with the vent set on cpap, meaning it was providing minimal support plus some oxygen. She gets one more dose tomorrow.
I'm sure hoping so Learning. Thank you
Thanks c20. Really appreciate it
Sounds like the hospital sped things up for your friend. Love to see that.
At least the lung improvement is hopeful. Im praying for him right along with my sweetheart all day.
Pretty sure they put her on precedex yesterday, don't know which drug it replaced. She's also getting fentanyl of course.
I'm on board with the trach now. At first I was resisting.
Really bottom line is she would be getting one in 2 days anyway as they have a 2 week max policy for breathing tubes.
Based on what I saw from her today, I think shes really gonna come alive mentally when they stop with the drugs.
Once again thanks for the helpful posts!!
Great answer CT, much appreciated. Im totally on board this trach deal now.
Most helpful and thanks for the prayers
Badge, I just inquired and they tell me they did a 'sedation vacation' yesterday which she failed miserably. She was flailing about, agitated, and hyperventilating. So needless to say she failed the breathing test.
Today she is much more animated and thats with quite a bit of drugs in her. Im hoping that means shes in there waiting to come out. I think that's why they're pushing for the trach.
Thank you badge. Truthfully I don't know how we could do a sedation holiday without her being watched round the clock. She is thrashing about since I got to the hosp this morning, they've turned the fentanyl up 3 times already and she's really not that calm. Eyes are really opening up and she's been nodding her head when I ask if she hears me. But if they turned all this stuff down it would be crazy in here.
Thanks c20, sorry to hear about your friend. Anything new?
Thank you so much, PL
Thanks Rock !!
My wife's friends and family are all on board. I told her doc I wanted to give her every possible chance to recover and come home and he said this was a no brainer. I just wanted some input from my extended family on the cydy board.
Thanks for the support.
Thank you so much scat
Thanks misiu, appreciate everything
Rock, misiu and other docs, input needed. My wife is having a tracheostomy tomorrow. With the tube down her throat she is not tolerating them cutting her sedation, so she is making no progress towards getting off vent. There is no way she can be coherent and able to follow commands at this level of sedation. Doc say doing the trach, which would have to be done Thursday anyway at 2 weeks, will allow them to pull the tube out of her throat, cut the sedation, so she can get her wits back and work towards getting off vent. Sound feasible??
By the way her lungs are fine now.
I really would check on what steroid he's getting as well
C20 im sorry to hear about your friend. I would not hesitate to call the hospital and try to worm your way to the administrator or chief medical officer. If your friends doc is on board and it's bogged down in hospital red tape, I guess I'd work at that angle. You may find a sympathetic ear and get some quicker action.
You're welcome trading.
Yes, the lack of food and sleep and stress is really catching up with me. I can feel it. But it's ok, compared to the situation my poor wife is in i have nothing to complain about.
The vents they use here have an oxygen range of 40-80 and a pressure range of 8-18. These are the numbers her doc gave me every day so i assumed they were important. Doc is happy with her lungs. Soon as her mental state comes around the tube is coming out. Hopefully soon.
I've raved enough about Dr.'s Pourhassan and Kelly on here, so I don't wanna sound like a Cytodyn fanboy. Safe to say they went out of their way for my wife and I. The day they got the authorization letter to FDA they had the lawyers and CRO working on it to ensure it was right. I don't know how many companies upper management would do all that for essentially no money.
Thank you LTL
C20 you're right on all counts.
Your friend is most likely getting a steroid. Do you know if it's dex or methylpredisone? My wife got dex for 5 days and went down the tubes each day. It seemed when they switched her to methylpredisone she first stabilized and then improved.
The LL, who the hell knows. When I began my quest to get it I was afraid she was gonna need it to save her life, she was declining that badly. But i gotta be honest. She did start improving before our drug showed up. I know probably some would like me to throw out some BS story that it saved her. I can't say that with any credibility, but quite frankly, I'm obviously glad she was improving without it. Money is great, but it doesn't compare to my wife of 34 years.
Thank you!
Trading, my prayers for your father in law.
I realize that it may take a few days for my wife to fully wake up, only because the doctor explained it to me.
BUT, he also saw fit to run a few grim possibilities by me, which really put me into a bit of a funk.
They have been Lowering her fentanyl during the day while making attempts to get her awake and breathing on her own. At night they turn it back on so she can rest. Yesterday, before I got there, she breathed on her own for 40 mins, which wiped her out. Eyes were open but she would not follow commands. After she rested she awoke and moved around a bit, but I can't say for sure that she knew who I was.
Vent is at lowest settings 40 and 8. O2 sats were in the 95 area yesterday. Thanks for the concern
Thank you !!
Thank you longtime. Apparently Sanford Health has a decent , if not better , research dept.
My wife's doc, when he got on board with the Leronlimab, had to clear it with the research dept. I assume part of that is making sure they can do whatever blood work is necessary. That's really all in know along those lines, really my focus now has to be helping her wake up. She was moved from the covid unit to the regular ICU, so I visit 8-8 each day starting yesterday.
C20, I have to admit the days are running together a bit for me, but I think FDA approved It on Monday, it was supposed to be here Wednesday but the blizzard set FedEx back, so it finally got here Thursday, and she was dosed Thursday.
Just the first one so far. Next one in about 5 days I believe.
Thank you
Thank you
Its hard to say. Her lungs were already recovering before I was able to get it here, and I thank God for that. Right now her vent is on 50 percent oxygen, 40 is the lowest setting, and her o2 sats are a healthy 95-96. Did the LL help her lungs recover further? Who the heck knows. They moved her to the regular ICU so im with her finally. They did a breathing trial awhile ago and she was able to breathe on her own for 40 mins, but while she had her eyes open, she wasn't really coherent either. They gonna try and wake her up a few times tomorrow. If she doesn't wake up in a couple days we are potentially looking at some grim prospects. Please pray for her.
Folks, remember to thank the doctors and nurses who are caring for your loved ones, and I mean EVERY TIME you speak with them. They are working long hours under oppressive conditions with a ton of pressure on their shoulders, and dealing with loved ones and family members who are already pissed off about the no visitation rules that are in effect at most hospitals. You can be a fierce advocate for your loved one and still be respectful and appreciative at the same time. That should be our goal.
Rock, as you know, according to FDA guidelines, the patient is only eligible for the Lilly or Regeneron monoclonals if he/she doesn't require supplemental oxygen. At that point they are saying it's too late. Whether that's true or not I do not know. Problem is lots of patients seem to be doing ok but, for whatever reason, head downhill in short order and wind up on oxygen so quickly the window of opportunity to get those particular monoclonals is closed. Days 5 thru 10 seem to be key for these patients. Since we saw some efficacy from LL in mild to moderate as well as severe critical, seems to me every darn covid patient should just get Leronlimab right away.
866-300-4374 is the after hours and weekend number at FDA EIND dept. I got thru to someone quickly on this line last weekend. I would try it Saturday and ask some questions, try and tie up whatever loose ends you can and put this together for your friend. Also you can email NP or Dr. Kelly for help if you haven't already. An o2 sat of 70 is nothing to fool around with, I'm sure you know.
Is he on dexamethasone? My wife was but she really didn't respond to it. When they switched her to methylpredisone she stabilized and started improving.
C20, do you know what your friends oxygen requirements are?
Folks, you know this already but this is huge news. It indicates a few things.
1) FDA has very little safety concerns with Leronlimab
2) FDA is probably preparing to approve it in January.
3) the FDA is not streamlining the EIND process because me and another guy requested one. The FDA is streamlining the process because it's being inundated with requests from doctors and patients.
Anecdotally, I know of a hospital in the Midwest running expanded access for Aviptadil (rlf100) and they are interested in using Leronlimab for their severe covid patients. This I got directly from the guy running the Aviptadil trial/expanded access.
It's all good as I see it.
Thank you CPA!
I missed the last question. Yes, the LL was delayed 1 day by the blizzard we had here. To be honest, she was slowly but steadily improving before our drug showed up, thank God. She could possibly be extubated in the next couple of days. Her 2 doctors and I had a pow wow when the LL showed up and it was decided to go ahead and dose her because the data is solid that it will not harm her and it may further help her lung function. So that's where we are at. Still on vent, not totally out of the woods, but trending in the right direction. When my quest for Leronlimab began, she was spiraling downward and her lung function was getting worse by the day. For all I knew, she could have been in bad bad shape by now needing the LL to survive. That's why I pushed so hard for it.
C20. That's an excellent question. I bugged the living daylights out of many doctors in the hospital where my wife is. In fact the first doc I dealt with was a cocky hospitalist who brazenly told me she would do fine, based on the fact they were able to treat other patients successfully with similar symptoms. She was on Bipap at the time with her o2's holding 90. The next day her o2's dropped into the upper 80's and they decided to intubate her before it became an emergency. This I think was the proper decision. But the cocky doctor then blew off my mention of Leronlimab....and aviptadil, to be honest. I then started working the phone and was able to somehow get the Chief Medical Officers assistant and plead my case to her. She promised me the CMO would look at my wife's chart. Shortly thereafter I got a call from the head of infectious disease there. He was the doc that listened and promised to research Leronlimab that
evening. I called him every day since, until the LL showed up. These folks are extremely busy, you have to make yourself heard!!! If you have a doc agreeable to getting your friend LL, you're ahead of the game. Keep pushing her. You can buy her a steak dinner when this is over, for now you gotta advocate for your friend.
Thank you Learning!
Thank you so much misiu. Really appreciate it.
Im already disgusted I didn't buy more on that pullback. Sure looks like it wants to creep back up