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pinkyD
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« on: March 26, 2020, 04:07:30 AM »

So I'm currently at the top of the list (YAY!) and am expecting the call at anytime. However, given the current coronavirus pandemic that has arisen, am concerned about receiving a transplant right now. Currently in my area, active coronavirus cases are at a low level but expected to increase in the coming weeks and surely more hospitalizations will occur. Thus I'm conflicted about whether I should accept an offer. I honestly don't want to be an immunosuppressed transplant patient in the hospital right now. Hospitals are breeding grounds for infection. I'm also concerned about the numerous visits to tx center I will have to make in the weeks following. I want need this kidney, but I also don't want to, well, DIE. Let me just lock myself up at home till this is all over. Any thoughts? Am I overblowing everything? How are you transplanted folks handling it?
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« Reply #1 on: March 26, 2020, 05:39:10 AM »

Your best bet might be to contact your transplant coordinator or whoever acts as your point of contact for questions. They would be the best informed to explain the measures in place at the tx hospital and if anything has been amended during this time. As well, if you are really that uncomfortable, you can always ask for a hold.

The hospital I was in has a small unit just for tx patients and they are not allowing visitors at this time. So, it's a case of dealing with health care workers.

In the post-tx appointments, it was a case of wearing a mask and hand sanitizer. It's pretty much the same protocols people are told to now (minus the mask) when they encounter people.

It's more a matter of regional health care decisions than any broad measures but elective surgeries have generally been cancelled. Tx is obviously not an elective surgery, but there was a case here on the local news where a hospital cancelled a live liver donor procedure (for the man's son) since it was considered elective. So, it may be just good to touch base with your tx contact to know the current situation.

As for how I am handling this pandemic as a tx patient, it's not really that much different than how the rest of the world is handing it. Social distancing/home isolation, some protective measures, and good hygiene. Staying aware of my body and how it feels. That's all. There's no silver bullet for the immune compromised.

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Simon Dog
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« Reply #2 on: March 26, 2020, 07:03:41 AM »

So I'm currently at the top of the list (YAY!) and am expecting the call at anytime. However, given the current coronavirus pandemic that has arisen, am concerned about receiving a transplant right now. Currently in my area, active coronavirus cases are at a low level but expected to increase in the coming weeks and surely more hospitalizations will occur. Thus I'm conflicted about whether I should accept an offer. I honestly don't want to be an immunosuppressed transplant patient in the hospital right now. Hospitals are breeding grounds for infection. I'm also concerned about the numerous visits to tx center I will have to make in the weeks following. I want need this kidney, but I also don't want to, well, DIE. Let me just lock myself up at home till this is all over. Any thoughts? Am I overblowing everything? How are you transplanted folks handling it?
I expect the risk of tuning down a transplant (assuming it has a KDPI you and your MD consider acceptable) exceeds the risk from the virus of saying yes.

It's like investing - there is no way to avoid risk (even FDIC insured cash has inflation erosion risk); it's a matter of making intelligent choices regarding which risks to take.

I had weekly labs and visits.  Chances are the visits can be done by phone or internet, and the issue was not physical examination (except for some pedal edema that could be communicate by phone), and the labs are often done at a local collection station (Quest or similar).

If you are intent on not accepting a kidney until we are past TEOTWAWKI, consider going on "inactive" waitlist status.  You don't lose you place in line; continue to accumulate days; and a kidney will not have extra out of body time while the tranplant center contacts you just to get a no.

Probably worth a discussion with your neph (not the transplant people - carpenters like to carpent; etc.).
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MooseMom
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« Reply #3 on: March 26, 2020, 08:22:23 AM »

I've been checking in with this site for a while now.  I'm a bit disappointed it hasn't been updated recently, but maybe later today it will be.  You might find some guidance here.

https://tts.org/tid-about/tid-presidents-message/23-tid/tid-news/657-tid-update-and-guidance-on-2019-novel-coronavirus-2019-ncov-for-transplant-id-clinicians
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« Reply #4 on: March 26, 2020, 02:53:18 PM »

I did see this article in the Sydney Morning Herald about how they are handling this situation in Australia...or not.

https://www.smh.com.au/politics/federal/kidney-transplants-halted-due-to-coronavirus-organs-to-be-discarded-20200325-p54dtz.html

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« Reply #5 on: March 26, 2020, 04:27:03 PM »

If we can post foreign sources in regard to this question, here are a few from Canada, mostly focused on lung transplants. Different ballgame but still the same operating rooms and hospitals.

Transplants are being influenced by hospital decisions, such as patient surge, need for equipment and generally keeping people away from the hospital. So, that's why I still think that connecting with the tx coordinator (or place where the tx will take place) could provide with more insight.

1. https://www.theglobeandmail.com/canada/article-transplant-patients-bumped-by-coronavirus-outbreak-face-anxiety-as/

2. https://www.cbc.ca/news/canada/nova-scotia/nova-scotia-woman-lung-transplant-covid-19-toronto-1.5509933

Another article shares: His kidneys are failing and soon he’ll need to start dialysis. But if dialysis machines are taken up by COVID-19 patients, he might not receive the treatment he needs. It makes me wonder because dialysis machines don't grow on trees, hospitals typically have only a handful in the spare room (at least mine did). But I don't know... Not tx related, but read if you want. The guy is wondering if his tx in June will go ahead: https://www.thestar.com/news/canada/2020/03/20/were-relying-on-you-this-canadian-family-hiding-from-the-novel-coronavirus-has-a-message-for-you.html

Edited to add this story. It's from March 12 and it seems things have changed by then. Scroll to the part where the University Health Network says organ transplants would hopefully continue and then work with other hospitals to ensure that a dip wouldn't occur. However, the cases in the area have since increased, and the lung tx postponements are a newer occurrence. https://www.thestar.com/news/gta/2020/03/12/ontario-hospitals-prepare-for-worst-case-scenario-in-coronavirus-outbreak.html Things change so best to be on the ball.

So, there's a lot more in play if a patient chooses to stay active as things may differ at the tx setting out of their control.
« Last Edit: March 26, 2020, 04:35:12 PM by UkrainianTracksuit » Logged
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« Reply #6 on: March 26, 2020, 06:19:55 PM »

Thanks for those links, UT.  I would imagine tx ops are going to be postponed in NYC but maybe not in a different location in the US or the rest of the world.  Even a tx coordinator might not know, or she may know the answer for today but not for next week.

I have read that COVID can lead to multiple organ failure, but it didn't occur to me that a patient might be put on dialysis and that, as a result, there may be a shortage of dialysis machines like there is a shortage of ventilators.  I would be very interested to know how many COVID patients are having to have dialysis.  Have any of you read anything about this?

It must be hard being a tx coordinator these days.
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« Reply #7 on: March 26, 2020, 07:13:07 PM »

Yes, I agree it may not be widespread, but one surgery has already been cancelled in Colorado: https://www.nbcnews.com/health/health-care/death-sentence-critically-ill-patients-denied-transplants-amid-coronavirus-outbreak-n1163066

Here's a dude in Cincinnati that also had his postponed: https://www.wlwt.com/article/former-kenton-county-superintendents-second-kidney-transplant-delayed-by-coronavirus/31917361

Ashville, North Carolina postponement. I don't think the guy was on dialysis yet because his numbers were and thus the surgery wasn't considered essential. https://wlos.com/news/local/coronavirus-puts-kidney-transplant-on-hold-for-asheville-womans-father

When I say check with the coordinator, it doesn't mean that they know what will go ahead, but rather, the state of affairs at the hospital and what has been put in place. So while they might not know green light/red light (they are not the head of the program after all) they can at least inform the patient what is being done in regard to care of patients. Such as no visitor protocols. For instance, my local neph would have no idea about what's happening at that location and would say it is "out of his hands." All patients can really do is follow all the areas of information available to them. Stay up to date and ask questions of those in the know.

This has some really basic info we all already know but it is kidney specific: https://kidney.ca/COVID-19-How-to-Protect-Yourself Naturally, they say to contact local authorities (transplant clinic and doctor) can provide more information. When it comes to tx questions, my local people always direct me to the out of town team for questions.

As for organ failure, if you keep up with coverage, you see that many patients that died in intensive care units developed sepsis. That consequently leads to multiple organ failure. If you scroll down to the section "Sepsis", there aren't numbers, but they state it seems serious. https://www.ncbi.nlm.nih.gov/books/NBK554776/ I am more on the conservative view on this that some may pass away before needing dialysis. Just an anecdotal example, but when I had respiratory failure, it was like a week or more in ICU (don't know exactly, was sedated) before they started dialysis (had an AKI at the time, prior to full on kidney failure).
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« Reply #8 on: March 27, 2020, 07:58:42 AM »

I do get updates from my transplant hospital regarding new protocols about how to stay safe in general terms, especially if you are coming to the hospital for labs or some outpatient procedure, but I've seen nothing tx related.  I haven't heard anything from my tx coordinator, and I don't really expect to.  But yes, I agree that if I were scheduled for a tx, I'd certainly make my pre-tx coordinator my first point of contact. 

It is interesting that your local people always direct you to the out of town people for questions.  That's the essence of my queries.  I don't want my local hospital to fob me off onto my tx center should I require hospitalization.  There's just not enough info out there on how to best treat a tx patient.  I don't know if my local hospital would have the immunosuppressants I would need if I were to have a lengthy stay.  I suppose they could acquire them.  I had to go to my local hospital just a few months after my tx because of neutropenia.  The communication between them and my tx center left much to be desired, so I am not sure I would feel supported and secure should I have to go there again.

Both of my parents died of sepsis originating from a UTI, so I am sadly aware of that particular horror.  I suspect you're right that a very ill patient might die before dialysis could save them.

Thanks again for posting those links.  Those stories are very informative, and it is interesting that so many of these stories are beginning to pop up.  Hopefully it will make people realize that there are consequences to COVID they'd not thought of!
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« Reply #9 on: March 27, 2020, 07:59:50 AM »

In terms of latest nephrology information, especially connected with covid-19, and if you're on Twitter, the #nephtwitter world is really strong there. You can follow lots of nephrology docs who share the latest information amongst themselves. As a patient, I'm mostly lurking but it is so useful to get a different perspective. It's too easy to wander off into anxiety laden, rage-inducing areas but if you stick with the docs it's interesting.
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SooMK
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« Reply #10 on: March 27, 2020, 09:20:01 AM »

It is interesting that your local people always direct you to the out of town people for questions.  That's the essence of my queries.  I don't want my local hospital to fob me off onto my tx center should I require hospitalization.  There's just not enough info out there on how to best treat a tx patient.  I don't know if my local hospital would have the immunosuppressants I would need if I were to have a lengthy stay.  I suppose they could acquire them.  I had to go to my local hospital just a few months after my tx because of neutropenia.  The communication between them and my tx center left much to be desired, so I am not sure I would feel supported and secure should I have to go there again.

I think there are few elements involved in my case in that they always pass me off to the tx center for queries. Most likely, it is due to the pancreas transplant. My tx doctor is correct in that few (outside of the tx world with programs) have experience with a tx'd pancreas and therefore take a hands off approach. I've been advised to call anytime when meanwhile the local neph clinic in hospital sometimes doesn't get back to me. There are numerous tx patients, but they are dialysis focused (in a hospital setting).

The other point is that I have direct contacts to the doctor that manages Infectious Disease for transplant patients. Such as,, I've been advised previously (and it still stands), that if I get a fever along with some other systems to call right away and then advise the attending physician (whoever that may be) to get in touch with him.  That's how I ended up out of town when my body got sent into overload recently. It's been set up this way from the beginning and to be honest, I feel much more supported by the tx center than the local team. It's not just me though: my lung tx friend pretty much only deals her tx clinic, but that is understandable.

I agree in that communication between the two is something to be desired as the tx center does not keep the locals in the loop. Not that it matters because they can't help anything anyway. But, no matter where we are or who treats us (God forbid), you're absolutely right in that there just isn't enough information out there, unless more case studies are circulated. Whichever anti-virals that emerge as effective would have be screened for interactions with tx meds and then managed in regard to immunosuppression. So, which study group is there, you know? It's kind of like a Catch-22: you don't want tx patients to be hospitalized but at the same time, this is the source of gaining clinical information.

There are papers slowly trickling out. This is not peer-reviewed as it was released quickly on the 12th: https://www.preprints.org/manuscript/202003.0190/v1 It indicates thymoglobulin induction as part of the treatment. We're all pretty familiar with that, but that's a specialized preparation unavailable everywhere.

Some good news! https://onlinelibrary.wiley.com/doi/abs/10.1111/ajt.15869 Reduced immunosuppression and corticosteroids.

This one IS peer-reviewed (yay) and gives a little good news too in that Coronaviruses have not shown to cause a more severe disease in immunosuppressed patients.. Not exactly super news, but you know. https://aasldpubs.onlinelibrary.wiley.com/doi/abs/10.1002/lt.25756

I am very sorry to hear that both your parents succumbed to such a wretched thing. :( Ugh.
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« Reply #11 on: March 27, 2020, 10:06:53 AM »

I don't know why, UT, but I keep forgetting about your pancreatic tx.  Well, not exactly FORGETTING, but that fact keeps being filed in the furthest region of my little brain.  Of course you would be "passed off" to your tx clinic, and quite right, too!  Kidney tx patients are a dime a dozen compared to pancreas patients.  Hopefully this all will be an unncessary discussion for us!   :pray;

That's very good you have direct contact to the Infection Disease doc!  I'm sure that makes you feel a lot safer in general.

Thanks for the link to the Wiley Library article about the kidney tx patient in China.  I had actually read about his case, but it was from a Chinese source, and I wasn't sure about its authenticity.

Now, the peer reviewed article by the hepatologist in Bergamo (Bergamo!) is fascinating, isn't it?  Influenza puts immunocompromised patients more at risk for severe disease than this particular family of coronavirus?  That's really interesting and is exactly the kind of information I was looking for, so thanks so much, UT!
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« Reply #12 on: March 27, 2020, 10:08:11 AM »

In terms of latest nephrology information, especially connected with covid-19, and if you're on Twitter, the #nephtwitter world is really strong there. You can follow lots of nephrology docs who share the latest information amongst themselves. As a patient, I'm mostly lurking but it is so useful to get a different perspective. It's too easy to wander off into anxiety laden, rage-inducing areas but if you stick with the docs it's interesting.

That's REALLY helpful and interesting!  Thank you, SooMK!!!
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« Reply #13 on: March 27, 2020, 11:26:46 AM »

Totally, MM, that tidbit out of “ground zero” in Italy was indeed interesting. Who would think? Still need time to mull that one over with the hamster wheel in my brain. But yes, I pray for everyone that we are only educating ourselves but not need to experience this! And hey, if this does become a seasonal disease in cycles as Dr. Fauci surmises, may doctors have adequate information to mitigate the risks in the future.  :grouphug;

In my free time, I answer calls for papers to journals, and I follow health-related ones for my own hobby. I’ll keep posting whatever I come across and will share sources for those that require a subscription to read.

Anyway, here is another paper out of Italy. It gets deep into the physiology of the kidney and COVID-19. As well, it mentions a little about medication changes for tx patients. Unlike the other article, it disputes steroid use as beneficial. https://www.karger.com/Article/FullText/507305

From the American Journal of Transplantation, so peer reviewed and reliable. It traces the case of a kidney transplant patient infected with COVID-19 and his relevant symptoms in Spain. Long story short, we may present atypical symptoms. Also discussed are which medications they used and protocols. https://onlinelibrary.wiley.com/doi/epdf/10.1111/ajt.15874
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« Reply #14 on: March 27, 2020, 12:50:39 PM »

How cool is this, UT?  Oh gosh, thanks so much for the links.  I really LOVE reading the "in the weeds" stuff.  I've just read the nephron article and learned so much.  I felt a bit reassured by their current recommendation is to not administer Retonovir as any benefits don't outweigh the increased risk of rejection.  I had not realized it has strong reactions to the usual cocktail of immunosuppressants.

So, if I am reading this right, it seems that, based on what is known (which isn't a lot), hemodialysis patients are at higher risk of being infected but not necessarily at higher risk of becoming severely ill, particularly with pneumonia.  Of course, this is based on one study of one dialysis clinic in China, so information is indeed limited.

I like reading about pathogenic mechanisms.  They are fascinating puzzles.

I do wish they'd stick with either COVID-19 or SARS-CoV-2 instead of using those terms interchangeably!  That just makes my brain have to work harder.

Interestingly, the renal tx patient in Spain was administered the Retonovir and was taken off tac.  Oh, and they gave him hydroxychloroquine!  Isn't that interesting!  Also interesting is how his tac trough remained within the acceptable range even after 10 days of being off it.  You're right...we may present atypical symptoms.  You see, now that you've shown us this information, we might be able to better inform our doctors should we become ill with COVID!  We'll be the smartest tx patients on Earth, thanks to you!

Again, thank you for taking the time to post these links.  I'll be interested in any other relevant information you come across.   :thumbup;

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« Reply #15 on: March 27, 2020, 03:41:36 PM »

What is scary is the leaked memo from Henry Ford Hospital in MI.  They are not just talking about triagiing who gets onto a ventilator, but using triage techniques to involuntarily remove patients already on ventilators if they think someone else will do better - and mentioned severe liver, kidney or heat disease would probably discontinue one for continued vent use.

It's a short hop from "who is most likely to survive" to "who will get the most potential years of life if they survive", even to the point where in makes mathematical sense to kick an older person with a strong SQ (survivability quotient, a term I think i just invented) in favor of a younger person with a lower SQ.    And then, of course, we will no doubt never read of a person of privilege, power and influence getting kicked off .... just like we hear of a lot of famous and powerful people who get liver transplants, but never hear of such a person dying while they wait for one.
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« Reply #16 on: March 28, 2020, 05:07:14 AM »

Hi MM, you are being much too kind. :P With years of post-grad education, this is what I do in my free time. I have so many articles saved, such as one on fecal transplants for geriatric horses as a solution to colitis. Thinking hmm, that might come in handy one day.

That said, your supposition about dialysis patients seems in line with the general line of thinking. Sadly, in the case of dialysis patients, they are typically older, have other diseases that often influence inflammation and generally more frail. This contributes to a pretty bad outcome. Inflammation is the big deal with COVID-19.

You mention the case study of a dialysis unit in China. Here is one from Italy released on the 23rd from the Journal of Nephrology. It is really informative on protocols within clinic. Further, it once again echoes that the inflammatory result of COVID-19 may not be as strong in dialysis patients with them showing suppressed symptoms. This paper states transmission between patients in a close space may be more of an issue. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7095015/pdf/40620_2020_Article_727.pdf

There is an article in Spanish from Mexico is anyone can read that language. I can't. :( The abstract is in English so I at least know what it's about but for those comfortable with Spanish, have at it: http://www.saludpublica.mx/index.php/spm/article/view/11330 Just scroll on down to PDF to get it.

On a side note, in the Journal of Heart and Lung Transplantation, there is a proposal that is not renal related at all, but it mentions AGAIN that the immunosuppressed present milder symptoms and discusses a bit about how to treat inflammatory reaction in immune compromised people. A quick scan gives you the information you need, but it is from Brigham and Women's Hospital and Harvard Medical School, so big brains! https://www.jhltonline.org/article/S1053-2498(20)31473-X/pdf

On a fun note, I came across a brand new case study looking only to study COVID-19 and tx patients only. It hasn't started yet as I think it's just in the announcement stage (literally just posted 4 days ago). It's in Spain so I imagine they have quite a pool to work with for participants. 

Simon Dog, it is absolutely gnarly to think about it, but it is just manifestation of the theories of medical ethicists that "life ends at 70!" and some hardliners that protest against socialized medicine not because of lack of choice, but rather that decisions rest with the state on who lives, dies and too expensive to keep chugging along. It just took a public health emergency to make it seem rational. As for the rich and famous, the same applies to testing for COVID-19. Some are openly wondering how the NBA got tested so quickly yet some working class folks (with mild symptoms) can't get one. Big sarcastic yay for social stratification. Nothing surprises me anymore.
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« Reply #17 on: March 28, 2020, 07:30:07 AM »

Quote
Big sarcastic yay for social stratification. Nothing surprises me anymore.
An argument can be made for stratification.

Suppose that a rich person is willing to pay 4x the going rate for a treatment for which there is a waiting list - but, by letting him/her buy the way to the front of the line, there are funds to provide treatment for 3 people who would not otherwise get treatment.    Sure, someone dies because he went to the front of the line but 3 people who would have otherwise died are saved.  Transplants are not a good example of this, since the finite supply means that additional money will not create more donor organs (under the current system), but think of other procedures with waiting time - hip & knee jobs; non-emergency bypasses; etc.

It's like the RR question.  A train is coming down the tracks about to squash 5 people.  You are working the yard, and there is no time to stop the train, but if you switch it to another track it will only run over one person.  Do you play god and reduce the body count from 5 to 1, or standby and do nothing?

As to the NBA - the argument was they were out in public a lot, but that just shifts the question - why are their jobs so important they aren't just staying home like the little people?
« Last Edit: March 28, 2020, 07:31:27 AM by Simon Dog » Logged
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« Reply #18 on: March 28, 2020, 08:04:54 AM »

I’m a forensic economist by trade, so I understand the notion of “someone pays more, this leaves available resources for others.” It works just as well theoretically as trickle-down economics did in the belief that capital from the wealthy would somehow finds its way to others.



You would have to consider the direction of the final payment as well. If a rich person is paying for a service (in this case, medically) it typically occurs in a two-tier system, thus privatization. That would be inaccessible to those patients you mention who would “theoretically” benefit from the one guy skipping the line. It would be a case of circular wealth as that input simply benefits another wealthy person who can easily find similar services elsewhere. Directors of the clinics are the one who pocket the excess.



In the case that the rich person A purchases a good or service in the health care sector to get ahead of the line in a public setting, there is absolutely no directive or mandate that surplus be placed in the coffers of treatment of clinical needs or in other departments. It could end up directed towards programming or bureaucratic needs. Theoretically, one can promote that notion, but on paper, there isn't much to ensure it happens.

Lastly, social stratification does not solely correlate with wealth, as there are other socioeconomic factors included related to mobility, one of them being age. Sociologists have gone on to study age stratification — hierarchical ranking of people according to age — as a subtopic on its own. So, whilst I mentioned social stratification, it is odd to have a person argue in favor of it (at least in the context of wealth, I give you that) in a reply to a follow up of a concern that one would prioritize a younger person against the viability of an older patient. After all, as you note in regard to wealth, “sure, someone dies.”

Edited to Add: I know the history of topics such as this on this board as they often turn into case of to and fros. That isn't my intent on here so if possible, let's stick to Transplant and COVID-19, as there have been sources, a great twitter feed (Thanks SooMK) and input. Use this as a point of contact on the topic rather than Hegelian dialectics.
« Last Edit: March 28, 2020, 08:17:19 AM by UkrainianTracksuit » Logged
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« Reply #19 on: March 28, 2020, 09:04:20 AM »

UT, my Spanish is decent, so I read through the paper out of Mexico, and it outlined protocols that one would expect.  HD patients who are covid positive should isolate themselves at home when not at the clinic.  It is preferable for those patients to receive their treatments in a separate room to continue their isolation if at all possible, but if not, dialysis staff should be equipped with PPE.  The article also shows a flow chart to assist staff in determining the possible covid status of patients who show up with various symptoms, all in the absence of testing.

Have you ever learned a new word or been made newly aware of a concept, and then you see it everywhere?  I happened to catch a documentary about fecal tranplantation (in humans, though not of horses) a couple of years ago.  I was fascinated by the concept and quickly saw the logical benefit of it.  The documentary followed a donor (a very healthy looking young man) and a recipient with C Diff (a topic with which most tx patients are aware).  She recovered completely.  Anyway, since then, I've been seeing tales of this procedure everywhere I go.  I do believe there is an IHD member that has had such a transplant.

Regarding the letter/memo from Henry Ford, this is the same kind of dilemma they faced in Italy.  I did see the chart they were proposing that gave points to people in specific age groups and/or with specific co-morbidities, including solid organ transplantation.  If the patient got more than 5 points, a decision would have to be made whether or not that patient's chance of survival would be "worth" the use of already scarce resources, to put it crudely.  I have spent days trying to find that chart again with no luck.  Anyway,at the time, that was deemed to be disgraceful and inhuman (but "foreign"), and now we are seeing that mindset here.  Hopefully, it will never come to that.

I do have a twitter account but I have never used it.  Maybe I will now, having read your post about nephs on twitter, SooMK!
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« Reply #20 on: March 28, 2020, 10:13:56 AM »

Isn't it weird? It's true that you barely hear about fecal transplants, but once you do, they seem everywhere. In fact, it was the member on here (nice lady, Angie, I think?) that introduced the whole topic to my attention in the first place! Full circle, I guess?  :lol;

I haven’t seen this covered by foreign news as I imagine they would deem it questionable. And understandably so! But, it is in the Russian newsfeeds that the Federal Medical-Biological Agency has an effective drug regime. Like in the focus on hydroxychloroquine, another malaria drug (mefloquine) is the “basis” here. They note it was based on French and Chinese experience, so who knows, right? Here is the link though it may seem strange to some. http://fmbaros.ru/press-tsentr/novosti/detail/?ELEMENT_ID=38052



It is the legitimate public health agency of the country but again, wait and see what the data shows, right?

Apparently, this drug stops the cytokine storm (overreaction by the immune system) at the cellular level and thus prevents the cell replication that causes the immune response. This is interesting for us: the immune-suppressing nature of mefloquine prevents such a big inflammatory response. In conjunction, it would be used with macrolide antibiotics (such as azithromycin, which has been mentioned in similar cases with hydroxychloroquine) and synthetic penicillins. This is done to prevent a secondary bacterial-viral infection which allows for “an increase concentration of antiviral agents in blood plasma and lungs.” 



Naturally, I had to look up mefloquine in regard to sold organ transplant. Read this: Antimalarial drugs can be used safely in most patients without incurring problems. However, certain drug-drug interactions must be taken into consideration such as those between quinine and chloroquine with CsA: quinine decreases CsA blood levels, chloroquine increases CsA blood levels (Side note: In other words, calcineurin inhibitor levels are influenced the type of drug). This may be extrapolated to other immunosuppressive agents which depend on cytochrome P450 for their catabolism. Moreover, TAC together with chloroquine, artemisin combinations, or mefloquine increases the risk of arrhythmia. (Side note: talking about tacrolimus here causing irregular heartbeat). SO PERHAPS… those learned minds will figure out the balance that works, even for us tx patients.
Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6160964/pdf/pathogens-07-00065.pdf



Then, I had to look up interactions between immune-suppressants and macrolide antibiotics. To be honest, there is a page in my transplant binder that covered safe/unsafe antibiotics but kinda too lazy to dig it out. As usual, there are interactions between these and cyclosporine and tacrolimus. The best bet for use in tx patients turned out to be azithromycin in one study. Kinda good news as that’s one typically in use with the experimental treatments right now. See source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6385328/pdf/10.1177_2054358119830706.pdf



Then, I followed the rabbit hole to this famous list of drugs that can have off label use to COVID-19. It was pretty cool to see cyclosporine A (though that isn’t used that much with us anymore) and mycophenolic acid (CellCept, Myfortic) listed here. https://media.nature.com/original/magazine-assets/d41573-020-00016-0/17663286



So, while there still isn’t a magic bullet with treatment, it seems as though certain drugs from certain families in combination with others is providing direction overall. There are so many sources out there that discuss the side-effects of these malaria drugs, especially an article just on mefloquine and psychotic effects, too. 

And I should probably stop right about here.
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Simon Dog
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« Reply #21 on: March 28, 2020, 10:56:22 AM »

Quote
Regarding the letter/memo from Henry Ford, this is the same kind of dilemma they faced in Italy.  I did see the chart they were proposing that gave points to people in specific age groups and/or with specific co-morbidities, including solid organ transplantation.  If the patient got more than 5 points, a decision would have to be made whether or not that patient's chance of survival would be "worth" the use of already scarce resources, to put it crudely
I believe the were using the Charlson Comorbidity Index (https://www.mdcalc.com/charlson-comorbidity-index-cci) and talking about denial at >= 5.   I'm at 4 (+2 age 60-69; +2 status post TX)

I think that proposal was for a gateway to ventilator allocation, not something to be used to evict ventilator occupants in favor of someone with a better score.
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« Reply #22 on: March 28, 2020, 01:38:49 PM »

YES, Simon Dog, that's exactly the chart I saw!  Thank you so much; it was driving me nuts.  I admit to not seeing the words "Charlson Comorbidity Index"; they could have been there but I just didn't notice.

And yes, at least in the context of Italy (which is where I saw this chart about 10 days ago), it was a proposal to be used as guidelines for who to ventilate, not who to kick off anyone already on a ventilator.

UT, yes, it was Angie!  What was strange was that it had been less than two weeks between the time I saw the documentary and when Angie posted about her doc's proposal to offer her this treatment.  I remember telling her all about the documentary and feeling oh so well informed and brilliant!

Gosh, how many times have I read the words "cytokine storm" in the past few weeks?  Faaaar too many!  And, I am far too familiar with rabbit holes. 

Yes, I had seen the list of drugs that might be used off label for covid-19, but I completely missed mycophenolic acid. which I take.  However, I now notice that it is not listed as being possibly effective against this covid-19 although it is against MERS.  But there are several "xxxxvirs" that look promising.

LOL, you mean there's a life outside of researching articles on mefloquine and psychotic effects?  Surely not!
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« Reply #23 on: March 29, 2020, 05:14:23 AM »

I appreciate all the work you diligent researchers are putting into finding information about dialysis/transplant patients: I am trying to keep from going down rabbit holes so it is so helpful for someone else to have done the work.

I had read that it was the body's own immune response that caused the lung damage and it occurred to me that transplant patients may be more likely to get COVID 19 but have less lung damage in response, as it seems your research is supporting. About 6 months after my transplant I received the first Shinrix vaccine; all my friends/sisters got it about the same time and were all sick from it with fevers and aches; I had no response to it at all. Same thing second shot made them all sick and me, nothing. Makes me wonder if thy body's immune response (effectiveness) was blunted by the transplant meds, and if our immunity to COVID 19 (once we get the disease, and its likely we will) will be less protective from future reinfection.

Meanwhile just gonna hang out here in The Villages in Florida which has made national news for being a hotbed of infection. Some of these seniors don't seem to understand social distancing; they are still standing around on the golf courses in groups and driving their little golf carts to neighborhood happy hours.But the Army Corp of Engineers has put up a field hospital on the polo field, so hey, good news, right?
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PD for 2 years then living donor transplant October 2018.
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