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Author Topic: Lost a Friend  (Read 2827 times)

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Offline funone

  • Member
  • Posts: 20
  • One Day at a Time
Lost a Friend
« on: June 25, 2008, 04:25:20 AM »
Hey all,

My ex's partner came down with PCP and was in hospital for about 10 days.  Yesterday, we lost him.  Naturally, my ex is devasted and I'm doing my best to comfort him. 

His partner tested poz while in the hospital...apparently he hadn't tested for 3 or 4 years and didn't know he was poz.   They began treating the PCP immediately, but didn't start HAART.  Shouldn't they have started him on HAART at the same time?  I'd like to know the protocol back in North America as I'm never sure if they really know what they're doing here in Japan. 

It's a cloudy day in Tokyo (sigh)

Offline Matty the Damned

  • Member
  • Posts: 12,228
  • Ninja Please
Re: Lost a Friend
« Reply #1 on: June 25, 2008, 04:27:12 AM »
Condolences on the loss of your friend.

If his immune system was sufficiently compromised that he came down with PCP then yes, he should have been offered HAART.

MtD

Offline komnaes

  • Member
  • Posts: 1,893
Re: Lost a Friend
« Reply #2 on: June 25, 2008, 05:32:44 AM »
I am really sorry for your loss Funone.

It's always sad to hear that lives have been lost because of late diagnosis. I was in Tokyo some months ago and saw that local NGOs were really stepping up on promoting regular HIV tests. I hope more people would do that.
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,975
Re: Lost a Friend
« Reply #3 on: June 25, 2008, 09:06:14 AM »
Hi Funone,

Please accept my concolences for your loss. 

I agree with the Damned One.  He should have been offered HAART. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline funone

  • Member
  • Posts: 20
  • One Day at a Time
Re: Lost a Friend
« Reply #4 on: June 25, 2008, 10:04:10 AM »
Thanks Matty, komnaes, and Betty,

That's what I thought.   Although I don't know all of the details, it doesn't make sense that they didn't offer him HAART.   I don't think I'll bring this up with his partner yet...I think it's too soon.

Komnaes, while I agree that the NGO's in Japan are doing a good job of stepping up, the government and society still seem to have their heads in the sand.  One frustration of mine is that the info about support groups, diet counselling, mental health issues, insurance coverage, etc, etc, isn't available in English, and it's frustrating.  My doctor tells me that there is a real need for an English-speaking support group here.  I'm gonna see what I can do to start one.

Having said all that, the health care is good after diagnosis, but as we've learned, I think it depends on the hospital. 

Offline aztecan

  • Member
  • Posts: 5,399
  • 29 years positive, 57 years a pain in the butt
Re: Lost a Friend
« Reply #5 on: June 25, 2008, 11:36:46 AM »
Hey funone,

My condolences on the loss of your friend. It is never easy.

Unfortunately, when someone is already at that advanced stage of HIV disease, HAART may or may not have been beneficial in his immediate recovery.

But, I agree, he should have had it made available to him.

BIG HUGS,

Mark
« Last Edit: June 25, 2008, 11:38:39 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline AlanBama

  • Member
  • Posts: 3,641
  • Alabama: the 'other' 3rd World Country!
Re: Lost a Friend
« Reply #6 on: June 25, 2008, 11:39:43 AM »
Sorry about the loss of your ex's partner.   It is never easy to lose someone to AIDS.

He should have been offered HAART, but with advanced PCP it most likely would have been too late anyway.... and thus the importance of testing.

My condolences,

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline komnaes

  • Member
  • Posts: 1,893
Re: Lost a Friend
« Reply #7 on: June 25, 2008, 12:27:16 PM »
..while I agree that the NGO's in Japan are doing a good job of stepping up, the government and society still seem to have their heads in the sand.  One frustration of mine is that the info about support groups, diet counselling, mental health issues, insurance coverage, etc, etc, isn't available in English, and it's frustrating.  My doctor tells me that there is a real need for an English-speaking support group here.  I'm gonna see what I can do to start one.

That sounds like a great idea Funone if you can put a group together to help others.

You'd know better than I do but Japan is indeed not a very foreigner-friendly country to live in. I remember years ago they would not let foreigners into certain bars and saunas, particularly for the latter because they feared foreigners would bring AIDS to the country. I don't know if you're Asian but while I am in Japan most people assume I am Japanese (I am Chinese, but I am told I look like Japanese) until I open my mouth and start to speak in halting Japanese.

My last visit to the (in)famous sauna in Shinjuku was 2 years ago, before my diagnosis and, crazy and self destructive as I was at the time, I fucked with 5 guys within one night and non of them wanted to use condom. It still surprises me that they can still, as you said, hide their heads in the sand.

Again, sorry about your friend. Keep the spirit up my friend and take care of yourself.

Hugs, Shaun
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline Iggy

  • Member
  • Posts: 2,435
Re: Lost a Friend
« Reply #8 on: June 25, 2008, 03:48:03 PM »
Funone,

Please accept my condolences on your loss.

Offline heartforyou

  • Member
  • Posts: 1,105
  • I must be a survivor in many ways...
Re: Lost a Friend
« Reply #9 on: June 25, 2008, 04:19:07 PM »
One person's death of HIV is always one too many...

My condolences.

Hermie
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline YaKaMein

  • Member
  • Posts: 368
Re: Lost a Friend
« Reply #10 on: June 25, 2008, 04:54:05 PM »
Sorry about your loss and wish you a peaceful grief. YaKaMein
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline Robert

  • Member
  • Posts: 2,646
Re: Lost a Friend
« Reply #11 on: June 25, 2008, 07:01:15 PM »
Hi funone.

Sorry to hear about your ex's partner.  My condolences.  As Herman (Heartforyou) says, one death from HIV is one too many.

I had somewhat the same experience.  I was admitted to the hospital with PCP and immediately intubated and put on a respirator for 2 weeks.  It was touch and go and the prognosis was not good.  It was during this time we found out I was HIV+.   The immediate concern was to clear the lungs and get rid of the pnuemonia.  My Dr. did not start me on HAART until they took me off the respirator.  In fact, as I recall I don't think my DR. started HAART until I was out of Intensive Care which was still another 10 days after they took the tube out but I can't be sure about that.  I'll ask next time I see her.

So I don't think there is any hard and fast rule about starting HAART with recovering from PCP.

robert
..........

Offline pacerintl

  • Member
  • Posts: 83
Re: Lost a Friend
« Reply #12 on: June 25, 2008, 09:00:09 PM »
Funone I am so sorry for both you and your ex boyfriend,  it's times like this where I don't know if I want to cry or scream.
You didn't mention if your ex's partner had been in the ICU but I with PCP he probally was...and that he was "critical'.

The introduction of HAART to patients that are "critical" ie (PCP, CMV, MAC, TOX), can introduce other immediate life threatening problems.

The following article that addresses this comes from USC, http://www.chestjournal.org/cgi/content/full/125/5/1602

Again, I am so sorry for you and your friend.

HAART Warming Improvement but Beware of Future HAART (and Heart) Attacks
Alison Morris, MD, FCCP and Laurence Huang, MD, FCCP
Los Angeles, CA
San Francisco, CA
Dr. Morris is Assistant Professor of Medicine University of Southern California, Keck School of Medicine Division of Pulmonary and Critical Care Medicine, and Adjunct Assistant Professor of Medicine University of Pittsburgh Division of Pulmonary, Allergy, and Critical Care. Dr. Huang is Associate Professor of Medicine University of California, San Francisco Division of Pulmonary and Critical Care Medicine and Positive Health Program.


Correspondence to: Laurence Huang, MD, FCCP, Associate Professor of Medicine University of California, San Francisco Division of Pulmonary and Critical Care Medicine and Positive Health Program, 995 Potrero Ave, Ward 84, San Francisco, CA 94110; e-mail: lhuang@php.ucsf.edu

Few modern diseases have experienced as dramatic a change in prognosis and treatment as HIV. Once considered uniformly fatal, HIV may now be effectively treated with highly active antiretroviral therapy (HAART).1 HAART has led to a decline in the morbidity and mortality associated with HIV infection and a decrease in the incidence of opportunistic infections.23 Unfortunately, not all patients have been able to benefit from HAART, particularly those without access to health care, those who are unable to adhere to or tolerate antiretroviral regimens, and those infected with drug-resistant virus. Furthermore, patients receiving HAART are subject to metabolic complications, including lipid abnormalities and glucose intolerance, which may impact the development of coronary artery and cerebrovascular disease.1

Whether the changes in the epidemiology of HIV have been reflected in admission patterns and outcomes in the ICU is an important question. Throughout the AIDS epidemic, ICU utilization has been influenced not only by the epidemiology of the complications of the disease, but also by patient and provider attitudes toward utility of ICU care.4 ICU admission and mortality rates have shifted multiple times during the course of the AIDS epidemic, with initial decreases in admissions in response to high mortality rates followed by increases as improvements in HIV care, particularly in the treatment of Pneumocystis pneumonia, improved ICU prognosis.567 Since the widespread availability of HAART, few studies exist to guide clinicians in the ICU care of patients with HIV infection.

The current study by Narasimham and colleagues (see page 1800) explores the changes in ICU care during the era of HAART (1996 to present). They compared hospital admissions of patients with HIV infection in the first 6 months of 2001 to a 1-year period of time 10 years earlier. In contrast to their original hypothesis, the authors found an increase in the number of ICU admissions for patients with HIV infection in the HAART era, and speculated that this increase might be due to an increasing number of patients living with HIV. Two other studies have examined single-institution ICU admission rates in the era of HAART. Nuesch and colleagues8 reported in a series from a Swiss hospital that ICU admissions as a percentage of total hospital admissions of patients with HIV infection increased from 6.3% (from 1994 to 1996) to 11.8% (from 1997 to 1999). In contrast, we found a decrease in the number of ICU admissions for patients with HIV infection in the HAART era (from 1996 to 1999) compared to the 4-year period immediately preceding (from 1992 to 1995) in San Francisco.79 These differences may result from variations in local populations or practices or from the slightly different time periods examined by the studies.

Despite an increase in the number of ICU admissions, the authors reported an encouraging increase in hospital survival from 49% from 1991 to 1992 to 71% in 2001. Similarly, Nuesch and colleagues8 (from 71 to 75%) and our series (from 63 to 71%) also found improvements, albeit modest, in survival. Knowledge of the improved survival of patients with HIV infection is useful for clinicians in discussing prognosis and in deciding utility of care with their patients.

Of importance to clinicians caring for these patients, the authors reported an increase in the number of non-AIDS–associated admission diagnoses. Similar to our study, this study found that non-AIDS–associated diagnoses account for a higher proportion of ICU admissions than AIDS-associated diagnoses. Cardiac (myocardial infarction, unstable angina), GI (GI bleeding, hepatic encephalopathy), renal (renal failure), and neurologic disease as well as drug overdose (reflecting the changing epidemiology of HIV infection with increases in injection drug users) are now frequent admission diagnoses in patients with HIV infection. Although respiratory failure is still common, it accounted for less than one fourth of all ICU admissions in the current study, and respiratory failure secondary to Pneumocystis pneumonia was quite rare (< 5% of admissions). These proportions represent dramatic changes from all published series prior to the HAART era.

Clinicians also need to be acutely aware of complications that may result directly or indirectly from the use of HAART. Patients may acquire drug hypersensitivity reactions (more common with certain antiretrovirals than others), resulting in fever, hypotension, and acute interstitial pneumonitis with respiratory failure.10 Fatal lactic acidosis from nucleoside reverse transcriptase inhibitors has been described.110 Concurrent use of zidovudine and corticosteroids may result in severe myopathy and respiratory muscle dysfunction.10 In addition, reports have documented several cases of respiratory failure related to HAART initiation and immune reconstitution resulting in a paradoxical worsening of Pneumocystis pneumonia.11 Distinguishing HAART-associated immune reconstitution with paradoxical worsening from Pneumocystis pneumonia treatment failure or a superimposed respiratory infection is often clinically challenging.

In addition to these "HAART attacks," clinicians need to be aware of future heart attacks. The impact of HAART on decreasing HIV-associated morbidity and mortality has resulted in an ever-aging population of patients with HIV infection, subject to the entire spectrum of associated medical illnesses. The combination of increasing age with HAART-associated metabolic complications including hypertriglyceridemia, hypercholesterolemia, insulin resistance, and type 2 diabetes mellitus portends an increase in future coronary and cerebrovascular events that may result in ICU admission.

Although the current findings of an improved mortality for patients with HIV infection receiving intensive care in the era of HAART are heartening, it is important that research in this area continue. There may be significant differences in regional mortality rates depending on the populations served and physicians’ familiarity with HIV-associated complications. The question of whether initiating HAART in critically ill patients with HIV infection improves mortality remains unanswered and is currently being studied in a prospective, randomized, multicenter study. There may also be future changes in the epidemic resulting from drug resistance, both in the HIV virus and in the HIV-associated opportunistic infections. Drug-resistant HIV may lead to decreases in the effectiveness of HAART, which may, in turn, lead to increases in opportunistic infections. If so, then reports suggesting that opportunistic pathogens such as Pneumocystis may also be developing drug resistance become increasingly concerning.12131415

Studies of ICU epidemiology and outcomes serve to guide clinicians in offering appropriate care to their patients and in providing complete and accurate differential diagnoses. The current study suggests that ICU outcomes in patients with HIV infection are improving. However, clinicians need to be familiar with HAART-related complications and to remember to include non-AIDS–associated diagnoses in their differential when caring for those with HIV infection in the current era.

Offline pacerintl

  • Member
  • Posts: 83
Re: Lost a Friend
« Reply #13 on: June 25, 2008, 09:04:00 PM »
For anyone that doesn't want to read the entire article the part that deals with whether to introduce of HAART in the ICU follows.

Clinicians also need to be acutely aware of complications that may result directly or indirectly from the use of HAART. Patients may acquire drug hypersensitivity reactions (more common with certain antiretrovirals than others), resulting in fever, hypotension, and acute interstitial pneumonitis with respiratory failure.10 Fatal lactic acidosis from nucleoside reverse transcriptase inhibitors has been described.110 Concurrent use of zidovudine and corticosteroids may result in severe myopathy and respiratory muscle dysfunction.10 In addition, reports have documented several cases of respiratory failure related to HAART initiation and immune reconstitution resulting in a paradoxical worsening of Pneumocystis pneumonia.11 Distinguishing HAART-associated immune reconstitution with paradoxical worsening from Pneumocystis pneumonia treatment failure or a superimposed respiratory infection is often clinically challenging.

In addition to these "HAART attacks," clinicians need to be aware of future heart attacks. The impact of HAART on decreasing HIV-associated morbidity and mortality has resulted in an ever-aging population of patients with HIV infection, subject to the entire spectrum of associated medical illnesses. The combination of increasing age with HAART-associated metabolic complications including hypertriglyceridemia, hypercholesterolemia, insulin resistance, and type 2 diabetes mellitus portends an increase in future coronary and cerebrovascular events that may result in ICU admission.

Although the current findings of an improved mortality for patients with HIV infection receiving intensive care in the era of HAART are heartening, it is important that research in this area continue. There may be significant differences in regional mortality rates depending on the populations served and physicians’ familiarity with HIV-associated complications. The question of whether initiating HAART in critically ill patients with HIV infection improves mortality remains unanswered and is currently being studied in a prospective, randomized, multicenter study. There may also be future changes in the epidemic resulting from drug resistance, both in the HIV virus and in the HIV-associated opportunistic infections. Drug-resistant HIV may lead to decreases in the effectiveness of HAART, which may, in turn, lead to increases in opportunistic infections. If so, then reports suggesting that opportunistic pathogens such as Pneumocystis may also be developing drug resistance become increasingly concerning.12131415

Offline sharkdiver

  • Member
  • Posts: 1,350
Re: Lost a Friend
« Reply #14 on: June 26, 2008, 12:12:31 AM »
My condolences for your loss,

Sharkdiver

Offline Robert

  • Member
  • Posts: 2,646
Re: Lost a Friend
« Reply #15 on: June 26, 2008, 12:56:54 AM »
Hi funone....

It's me again.  I read pacerintl's post and it looks like the verdict's still out. 

Quote
The question of whether initiating HAART in critically ill patients with HIV infection improves mortality remains unanswered and is currently being studied in a prospective, randomized, multicenter study.

Please take care of your ex over the next few days.  He's going to need all the love and attention he can get.

robert
..........

Offline joemutt

  • Member
  • Posts: 1,042
Re: Lost a Friend
« Reply #16 on: June 26, 2008, 01:44:52 AM »
I am sorry about your loss. What Herman said.
Joe (who wishes there was an english speaking support group here in Bangkok).

Offline LordBerners

  • Member
  • Posts: 415
Re: Lost a Friend
« Reply #17 on: June 26, 2008, 06:10:52 AM »
...I'd like to know the protocol back in North America as I'm never sure if they really know what they're doing here in Japan.

I think in the US being put on HAART is probably contingent upon whether you have insurance, funone, and of course upon whether your insurance will pay.
Please, just call me Berners.. or Baron.

Offline Assurbanipal

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  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Lost a Friend
« Reply #18 on: June 26, 2008, 10:11:02 AM »
My condolences on the loss of your Friend. 

We all want to know that people we care about got the best care.  If it helps, my experience was like Robert's.  When I had PCP and was in intensive care they did not start HAART until after I was out of the hospital.  My doctor said that with a very low tcell count the potential for complications of Immune Reconstitution Syndrome interacting with and worsening the PCP was why they waited.

Hope you feel better about his care.

A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline funone

  • Member
  • Posts: 20
  • One Day at a Time
Re: Lost a Friend
« Reply #19 on: June 26, 2008, 10:34:20 AM »
I really appreciate everyone's kindness.  aztecan, AlanBama, Iggy, heartforyou, YaKaMein, sharkdiver, and joemutt, thanks for the messages of condolences and Pacerintl, thank you for the info regarding treatment issues. 

Assurbanipal and Robert, hearing your stories helps a lot.  I'm glad that you are here to tell them.  It also gives me comfort knowing that the doctors kinda maybe sorta know what they're doing, so yes, I feel a little better about the care he received.

LordBerners, I don't know about his insurance situation, but I believe that in Japan, it's the law to treat someone first and ask about insurance later.  Japan's sytem sits somewhere between that of the US and the system in Canada. 

Robert, you're sweet.  That's exactly what I'm gonna do....take care of him.  He's young and new to loss and grief.  I, on the other hand, have dealt with more than my fair share and I think I have a lot to offer him during this painful time. 

joemutt, I'll keep you posted as to how things are coming along with an English-speaking support group. 

Thanks again to all

P.S. komnaes, I'm not Asian.  I'm a white boy (if 46 is still a boy) from Western Canada 
 

 


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