Expressing a concern for Guy Fawkes/daddy

[LookingAround]

It’s VERY common for covid patients in ventilators to not be able to be weaned. Such patients are not candidates for transplants. They are far too ill.

[excelntsvc]

perhaps this point has been raised in the many posts here, and i've just not the time/patience to sort through it all ... Guy's situation should serve as a lesson for us all that simple planning steps are essential ... everyone should have a Will; everyone should have a Living Will; everyone should have readily accessible documents with important contacts ... You do not have to spend a fortune on a will or a living will or a medical power of attorney or a durable power of attorney ... there are simple , legal documents available online for download with language specific to every state ... get them, fill them out, have them notarized ... i wish him nothing but good, and i know his health has been a continuing struggle in recent years ... but we all need to take steps to protect ourselves .. not just as we age, but at any age

[Walker1]

So sad. Prayers.

[Guest]

It’s VERY common for covid patients in ventilators to not be able to be weaned. Such patients are not candidates for transplants. They are far too ill.

Boy, is that statement easy to disprove in the age of the internet...

https://apnews.com/article/health-lung-transplants-coronavirus-pandemic-detroit-97d7ab3da5d6b77476e70524329dce51

"Doctors decided to induce labor a week later, and Mia was born. Dennis developed pneumonia and her lungs deteriorated to the point where a ventilator was necessary. She was subsequently placed on another special breathing device but her lungs weren’t improving. “There’s really no words you can put to it, right?” said Dennis’ husband, Ricky. “Your wife’s fighting for her life, and you have a new baby at home. It was tough.”

A double lung transplant was performed on Jan. 16. “Her lungs were completely destroyed by this inflammatory response to the virus, and without transplant she would not have been able to be alive,” said Dr. Lisa Allenspach, medical director of the Henry Ford lung transplant program in Detroit."

https://stm.sciencemag.org/content/12/574/eabe4282

"Lung transplantation can potentially be a life-saving treatment for patients with nonresolving COVID-19–associated respiratory failure."

[+ JEC]

Boy, is that statement easy to disprove in the age of the internet...

https://apnews.com/article/health-lung-transplants-coronavirus-pandemic-detroit-97d7ab3da5d6b77476e70524329dce51

"Doctors decided to induce labor a week later, and Mia was born. Dennis developed pneumonia and her lungs deteriorated to the point where a ventilator was necessary. She was subsequently placed on another special breathing device but her lungs weren’t improving. “There’s really no words you can put to it, right?” said Dennis’ husband, Ricky. “Your wife’s fighting for her life, and you have a new baby at home. It was tough.”

A double lung transplant was performed on Jan. 16. “Her lungs were completely destroyed by this inflammatory response to the virus, and without transplant she would not have been able to be alive,” said Dr. Lisa Allenspach, medical director of the Henry Ford lung transplant program in Detroit."

https://stm.sciencemag.org/content/12/574/eabe4282

"Lung transplantation can potentially be a life-saving treatment for patients with nonresolving COVID-19–associated respiratory failure."

Respectfully, there is a difference between something being medically possible VS realistic or practical. There are a limited number of donated organs and the ones available are prioritized by length of time waiting and probability of recovery. Also in many cases insurance has to approve/deny payment for the procedure. Kidney failure is sadly too common with severe COVID and has put strain on the donor system, if you have a family match ready to go to donate a kidney you might have a better chance.

[marylander1940]

Respectfully, there is a difference between something being medically possible VS realistic or practical. There are a limited number of donated organs and the ones available are prioritized by length of time waiting and probability of recovery. Also in many cases insurance has to approve/deny payment for the procedure. Kidney failure is sadly too common with severe COVID and has put strain on the donor system, if you have a family match ready to go to donate a kidney you might have a better chance.

 

and financially reasonable although we can never put a price on a human life.

[+ JEC]

PS a colleague of mine had COVID early on and was in kidney failure and put into a medically induced coma, but recovered. So we should not give up hope yet, but also be realistic.

[Guest]

Respectfully, there is a difference between something being medically possible VS realistic or practical....

I was responding to the statement in a post which said "Such patients are not candidates for transplants," which is simply factually incorrect. Whether Daddy's insurance will pay for the procedure or whether a match can be found are issues which can be addressed if Daddy is a candidate (assuming that's a viable treatment option), and the proxy decision maker wishes to pursue this.

Edited March 19, 2021 by Unicorn

[SirBillybob]

The lung transplant is an interesting question. How many of us have living will directives that would contain that degree of specificity? If I were to be precipitously struck with the same scenario as GuyF it would likely not occur to my substitute decision-maker(s) to investigate lung replacement, though I have specified in my advance directives some general references to coma duration endpoint and judgement of futility, etc.

 

Are ICU’s covering off, initiating, transplantation option considerations in consultation with surrogate decision-makers? I suspect not, given the volume of acutely ill COVID patients, and the appointed person would likely have to assertively come at it with the notion that everything short of cryogenics is on the table.

[+ JEC]

Impacts of severe unmanaged COVID include severe inflammation (which cause cause multiple organ failure but especially Kidney) and blood clotting (which can cause embolisms, blood clots which block blood flow and cause tissue to die, in the lungs or brain are especially harmful). If too much lung tissue dies, the lungs cannot be salvaged....which may be why weaning from a ventilator is not working. We have come a long way in a year, and most hospitals are now able to treat these symptoms which is why the COVID mortality rate has dropped so significantly. The fact that Daddy was home, untreated for so long prevented him from receiving critical life saving treatment sooner.

Edited March 18, 2021 by JEC

[former lurker]

I've always wondered about the provision that was supposed to be in the ACA providing co-ordination of medical records electronically. Such trouble finding emergency contacts tells me that prior records of medical care and contacts were not found as those would have such information. I hope medical record co-ordination is better than I suspect.

 

Hoping Daddy recovers fully.

 

You're making some assumptions about what is in those medical records. A lot of people do not plan for the potential of being unable to make medical decisions for themselves. A lot of people fail to update their contacts for emergencies. And a lot varies by state. A lot of states encourage health care workers to press for health care proxies, advanced directives, etc. Many others don't.

[+ Charlie]

You're making some assumptions about what is in those medical records. A lot of people do not plan for the potential of being unable to make medical decisions for themselves. A lot of people fail to update their contacts for emergencies. And a lot varies by state. A lot of states encourage health care workers to press for health care proxies, advanced directives, etc. Many others don't.

We have had the same personal physician for several years, and it was only a few months ago that he asked whether we had advanced directives. We did, but we had never given him the copies, and he had never asked for them before.

[former lurker]

I was responding to the statement in a post which said "Such patients are not candidates for transplants," which is simply factually incorrect. Whether Daddy's insurance will pay for the procedure or whether a match can be found are issues which can be addressed if Daddy is a candidate, and the proxy decision maker wishes to pursue this.

 

I'll defer to your greater knowledge on the transplant possibilities. I will say that not having an advocate that has an ongoing relationship with Daddy is likely to make more extraordinary measures less likely to be employed, especially given his age and the health issues he has struggled with from his diabetes. There were a number of times that my forceful advocacy on behalf of my father resulted in doctors capitulating and pursuing treatments that extended his life by years.

[Guest]

I'm not sure what you mean by "I didn't know a hospital had that authority...". Hospitals (in the US) are required to determine the most appropriate proxy decision maker for patients who are unable to communicate their wishes, and it's supposed to be the person who is most intimate/knowledgeable about the patient. Are you suggesting that a bench trial takes place every time a patient who can't communicate effectively is in the hospital without Advanced Directives/DPA? We'd have to hire a lot of judges! (I will tell you that a majority of patients don't have advanced directives, though many do).

Of course, there can be disputes among family members. If the health care team cannot resolve disputes among a patient's intimates, ethics committees are usually drawn in, and family conferences are held with the committee members, the patient's intimates, and the health care team, and there usually is some resolution. I can't recall the courts getting involved (to assign a decision-maker) in my decades on that committee. The only time I heard of the courts getting involved in this matter was when I was at an ethics medical conference, and one speaker discussed a case in which the person named in documents as the power of attorney for healthcare was clearly not acting in the patient's best interests, and had a financial interest in the patient dying. It turned out that the patient was clearly not able to understand what he was signing at the time the documents were dated, and the hospital did take the matter to court (and win).

Now that there is a decision maker assigned for Daddy, I just hope someone would be allowed to talk to the person and find out why they're not able to wean Daddy from the ventilator. If the issue is lung-related, I really hope that Daddy's advocate can request a consultation from a transplant team to see if a lung transplant is an option.

Thank you but yes, I thought it was a matter for the courts where someone needed to petition. I’ve learned something

[Luv2play]

We have had the same personal physician for several years, and it was only a few months ago that he asked whether we had advanced directives. We did, but we had never given him the copies, and he had never asked for them before.

Was that an idle question on his part or after he had examined you? Lol

[Guest]

Thank you but yes, I thought it was a matter for the courts where someone needed to petition. I’ve learned something

Courts are needed if there is no one to be found, and a county conservator must be appointed. The court will typically ask what efforts the hospital has made to find someone more appropriate. Court-appointed conservators are typically bound by a set of rules, which, for the most part, entail going full-court press with all attempts of care and life extension. This may not be what the patient would have wanted. Courts may also be involved if family members cannot come to an agreement, especially if one family member feels the patient wanted more aggressive care than the person who normally would have been appointed as the decision-maker. This happens so rarely as to make the news when it happens (I remember a case in Florida or Texas in which the parents of the patient claimed the patient would have wanted to be kept alive in a persistent vegetative state, when the spouse said the patient would not--eventually there were documents found to prove the spouse was correct). Of course, if there is NO decision maker found (and no conservator yet assigned), then a judge must sign off on any non-emergent procedure needing consent, though this can be done fairly expeditiously over the phone.

[+ purplekow]

As I care for mostly indigent patients many of who are separated from their families, I have had to deal with conservators being appointed. In New Jersey it can take months to get someone appointed and Unicorn is correct in that in almost every case, there was a full court press to do everything, even when medical advice was to the contrary.

In none of the cases with which I have been involved, did the patient improve as a result of extraordinary care. In one case, a distant family member who was found by the conservator, was living in another country and agreed to make arrangements for ongoing care there. The hospital rented a private medical evacuation plane to fly the patient and a staff of caretakers to the other country and care for him until he reached the other facility.

As the patient was in a persistent vegetative state and he was only 24 years old, the cost, though exorbitant, was ultimately less expensive than caring for the patient for what might have been decades.

[Cooper]

Update: Monday, 3.22.

 

Called the hospital today to check up on Guy Fawkes/daddy. He did open his eyes but was unresponsive to any noises or movements. No other health changes. He’s now in “Palliative Care” and the DNR order was signed.

 

Let’s continue to keep daddy in our thoughts/prayer, and sending good karma and vibes.

 

Cooper

[+ poolboy48220]

Thanks for the update Cooper. I'm sending all the karma I can.

[Chuck50]

Cooper you are the best

[+ Reisr30]

@Cooper Thank you for everything you have done.

 

I am sending good karma and he is in my thoughts and prayers. I have to say that even though I never met him; I am quite sad that this has happened to him and hope for the best for him ?

[youngboldone]

This is heartbreaking to read. Continuing to send good thoughts for daddy's recovery.

[+ Lucky]

@Cooper Thank you for everything you have done.

 

I am sending good karma and he is in my thoughts and prayers. I have to say that even though I never met him; I am quite sad that this has happened to him and hope for the best for him ?

Many of us have met Daddy once he started attending events like The Hooville Weekend, now known as the Palm Springs Weekend. A multitude of years ago I met him in Seattle when the site was headquartered there. He loved to chat with the members of the forum.

[marylander1940]

Update: Monday, 3.22.

 

Called the hospital today to check up on Guy Fawkes/daddy. He did open his eyes but was unresponsive to any noises or movements. No other health changes. He’s now in “Palliative Care” and the DNR order was signed.

 

Let’s continue to keep daddy in our thoughts/prayer, and sending good karma and vibes.

 

Cooper

 

at least one good sign so far.

 

@Guy Fawkes is a tough cookie! He'll be victorious over Covid-19!

 

width=947pxhttp://cdn2.sbnation.com/imported_assets/1603269/Tough_Cookie_1.jpg[/img]

[FunInTheSun]

@Cooper you have done such a great service both to Daddy and this community. I am not the most active member here, but have gotten a good sense of many of the pillars of the message board - @Hung_Cody’s exceptional taste and @big dale’s snark (and legendary schlong) just to name a couple. But you have demonstrated a whole new level of what it means to not just be a message board but a community.

 

I don’t know Daddy but appreciate his work over the past ~20 years. Your actions throughout this crisis are a testament that he has been able to forge a community among men not just a convenient board for hobbyists. Truly an accomplishment to be proud of.