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Author Topic: vampires  (Read 70015 times)

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Offline numbersguy82

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Re: vampires
« Reply #200 on: October 19, 2023, 07:49:46 pm »
it's a Ryan White requirement.

Providers who deal with HIV patients eventually have to deal with Ryan White aid for those patients. That aid comes with requirements of course. In fulfilling those requirements, providers often end up just counting and treating every patient (insurance, medi-care -caid, RW, etc) under those requirements.

Wow that’s really interesting. It makes total sense as well.

I couldn’t agree with you more about RW. The US usually doesn’t get things right, but that program helps so many and seems to do so quite efficiently!
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Offline numbersguy82

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Re: vampires
« Reply #201 on: October 20, 2023, 07:03:53 am »
It doesn't take long but it's just not something they can fit in the limited time I grant them as it is. Although if they stopped asking stupid questions it might fit.




I would be running STI testing as well...I have the same thoughts whenever some in the "do I have HIV" section claims to only have had a massage and nothing else or that they are virgins or monogamous ;D

Hey now… I’m fairly sure I had enough sex in my 20s and 30s to hold myself over for a while. My last relationship ended in 2018 and I haven’t been with anyone since. I guess my mental health became a priority over the physical aspect. I’m looking forward to coming out of retirement eventually…
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Offline Loa111

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Re: vampires
« Reply #202 on: October 23, 2023, 06:26:49 am »
Had my 4 monthly Vampires ID Clinic visit mid last week.

Indeed, it has become very routine and normal these days, which is a good thing.
Undetectable.
Good news in that for the first time since my DX over 5 years ago, my CD4 has hit an amazing 414. That's the highest ever so far. Docs do say it is better if over 500, so maybe I'll hit that at some point in the future.

I was unwell in August, spent a week in bed, I suspect it was Covid but I didn't test. Anyway, doc give me a bit of an extra check, listened to my lungs breathing etc. Doc will have a good look at my blood tests to see if all is normal.

Doc also did a Heart Risk Assessment, which classed me as low risk. The ID Doc heading up our clinic, I think is interested in how HIV may effect the Cardiac system  as one ages.

After all that, I got my annual Flu Jab. Delighted to get that out of the way on this clinic visit.

Then got my meds from the clinic pharmacist. Gave me 5 months supply of pills so thinking I might now be on a 5 month appointment rota which is fine by me.


Offline numbersguy82

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Re: vampires
« Reply #203 on: October 23, 2023, 06:31:30 am »
Had my 4 monthly Vampires ID Clinic visit mid last week.

Indeed, it has become very routine and normal these days, which is a good thing.
Undetectable.
Good news in that for the first time since my DX over 5 years ago, my CD4 has hit an amazing 414. That's the highest ever so far. Docs do say it is better if over 500, so maybe I'll hit that at some point in the future.

I was unwell in August, spent a week in bed, I suspect it was Covid but I didn't test. Anyway, doc give me a bit of an extra check, listened to my lungs breathing etc. Doc will have a good look at my blood tests to see if all is normal.

Doc also did a Heart Risk Assessment, which classed me as low risk. The ID Doc heading up our clinic, I think is interested in how HIV may effect the Cardiac system  as one ages.

After all that, I got my annual Flu Jab. Delighted to get that out of the way on this clinic visit.

Then got my meds from the clinic pharmacist. Gave me 5 months supply of pills so thinking I might now be on a 5 month appointment rota which is fine by me.

Wow congrats on the stellar “check up”! It sounds like you are flourishing and that is amazing. 5 months between appointments sounds like a dream to me. Keep that momentum going 🙌🏻
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Offline Jim Allen

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Re: vampires
« Reply #204 on: October 24, 2023, 11:28:13 am »
Had my 4 monthly Vampires ID Clinic visit mid last week.

Indeed, it has become very routine and normal these days, which is a good thing.
Undetectable.
Good news in that for the first time since my DX over 5 years ago, my CD4 has hit an amazing 414. That's the highest ever so far. Docs do say it is better if over 500, so maybe I'll hit that at some point in the future.

I was unwell in August, spent a week in bed, I suspect it was Covid but I didn't test. Anyway, doc give me a bit of an extra check, listened to my lungs breathing etc. Doc will have a good look at my blood tests to see if all is normal.

Doc also did a Heart Risk Assessment, which classed me as low risk. The ID Doc heading up our clinic, I think is interested in how HIV may effect the Cardiac system  as one ages.

After all that, I got my annual Flu Jab. Delighted to get that out of the way on this clinic visit.

Then got my meds from the clinic pharmacist. Gave me 5 months supply of pills so thinking I might now be on a 5 month appointment rota which is fine by me.

Great update and glad to hear your labs are looking good. Sorry to hear that you had been unwell with covid.

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Offline daveR

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Re: vampires
« Reply #205 on: October 26, 2023, 05:54:11 am »
Just had my latest 6 monthly check up. CD4's doing great, 860+. Kidneys doing what they normally do, slightly out of range. The viral load though is still hanging in there. Not much, 180 this time but for 6 years I was undetectable, that was whilst taking Complera. Since the switch to Triumeq I have had three detectable readings, 21,just over 200 and now 180, all in a row. I know that is still classed as being under control but after the first 6 years I kind of find it disappointing, especially as I always assumed Triumeq was a superior regime compared to Complera and was happy to switch when given the choice. I did ask about reverting to Complera but my Dr is not happy for me to take TDF in case my kidneys get worse.

Not sure what approach to take, insist on going back or just hang in there with a low viral load and see what happens.

Dave

Offline numbersguy82

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Re: vampires
« Reply #206 on: October 26, 2023, 07:38:02 am »
Just had my latest 6 monthly check up. CD4's doing great, 860+. Kidneys doing what they normally do, slightly out of range. The viral load though is still hanging in there. Not much, 180 this time but for 6 years I was undetectable, that was whilst taking Complera. Since the switch to Triumeq I have had three detectable readings, 21,just over 200 and now 180, all in a row. I know that is still classed as being under control but after the first 6 years I kind of find it disappointing, especially as I always assumed Triumeq was a superior regime compared to Complera and was happy to switch when given the choice. I did ask about reverting to Complera but my Dr is not happy for me to take TDF in case my kidneys get worse.

Not sure what approach to take, insist on going back or just hang in there with a low viral load and see what happens.

Dave

Hey there Dave-

Wow it sounds like you’ve been on a rollercoaster as of late, well errrr perhaps for a while now. I’m not too well versed on the medical side, but I know personally that your cd4s are the stuff that I only dream about. I know the VL is probably more annoying than anything at this point, but I wonder if it poses any real threat to your health at those small levels?

Anywho I hope things continue to go well for you. We actually spoke a lot about switching treatments on our peer support call not long ago. Feel free to pm me your email if you’d like to participate sometime.


All the best~ Alan

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Online Tonny2

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Re: vampires
« Reply #207 on: October 26, 2023, 08:12:13 am »





                    ojo.         @daveR…there are other combos you can try, I’m not sure where you live, but talk to your  doctor, abacavir it’s also bad for your kidneys…best of luck and please keep us posted…hugs

Offline Jim Allen

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Re: vampires
« Reply #208 on: October 26, 2023, 08:54:39 am »
Quote
I know that is still classed as being under control but after the first 6 years I kind of find it disappointing, especially as I always assumed Triumeq was a superior regime

Quote
I did ask about reverting to Complera but my Dr is not happy for me to take TDF in case my kidneys get worse.

I think you know the answer. Your HIV is controlled and suppressed, and there is nothing to stress about; it's hardly even a blip and reminds me of the article "What’s All This Fuss I Hear About Viral Blips?

Anyhow, it's bothering you, and at the end of the day, that's a problem even if medically it might not be, So what can you do?

Well, keep working with your healthcare provider. As it's Triumeq (DTG + ABC + 3TC) you could change the time of day you take it to coincide with a meal like lunch or dinner and see if that makes any difference. Check that you are not taking any supplements or other meds that are interfering with absorption, and retest the viral load to see if it's lower or stable.

If you do decide to switch, prehaps talk to the doctor to see if something with TAF is an option, as it's kinder on kidneys than TDF. Like Odefsey (R + FTC + TAF) or Biktarvy (BIC + TAF + FTC)  Cabenuva would be another option, particularly considering you were already taking rilpivirine (R) in the previous combination.  There are plenty of other options, including some of the not-often-used ones, like FTC + 3TC + DTG or 2x daily DTG + 1x 3TC etc.

Anyhow, try not to stress, and if it continues to bother you and doesn't change, then, switch and remember there are plenty of combinations. I am sure you will find something with your doctor that will suit your needs. https://www.poz.com/drug_charts/hiv-medications

Keep us posted, best Jim.
« Last Edit: October 26, 2023, 08:58:48 am by Jim Allen »
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Offline daveR

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Re: vampires
« Reply #209 on: October 26, 2023, 10:01:57 am »
Thank you all for the words of wisdom and reassurance. I shall just persist with Triumeq until my next appointment. The issue is really more psychological than anything else. I actually feel in very good health so should appreciate that simple fact. 

Regards
Dave

Offline leatherman

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Re: vampires
« Reply #210 on: November 06, 2023, 02:19:57 pm »
got my results back from the doctor visit last week.
Neither Larry or I have TB, Gonorrhea, chlamydia, or syphilis. So yea! to that. LOL I must admit having a stable partner makes not getting STIs real easy. And we become "good" numbers for Ryan White data.

My BP was high (ugh), A1C was a little high (5.7), and triglycerides were high too (228). Bleh! :P

Larry's cd4s have been bouncing around from 580 to 377 to 288 to 420; but his percentages are all right at or just barely below normal ranges. But I feel good about my cd4s. Finally down from 780 to 572. whew! I know, I know. I'm weird and probably the only one you know who's not afraid to have dropping or low cd4s. LOL As along as I stay 300+ I'm happy; those higher amounts just make me antsy. :D :D  cd% and cd4:cd8 ratio are still just 1 point into the "normal range". WooHoo! Only 3 decades of meds to get there.

I skipped the referral for the RSV vax. Ugh being over 60 can suck. But I rarely go out in public these days so I wasn't concerned enough to get it yet. I did, however, go get a Shingrex shot today. I need to get the next jab before my birthday in March, so that was an easy reminder to remember. My arm doesn't hurt (yet) and as long as I don't feel as crappy as we did after the covid/flu shots, I'll be happy. :D
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Offline Loa111

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Re: vampires
« Reply #211 on: February 15, 2024, 12:32:51 pm »
Went for my Vampires visit yesterday. It is every 4 months now.

All normal, still UD. My CD4 is 427, and it was over 400 at my previous visit which was last October. Pleased to hear this, that my Cd4 is trending upwards the last few months, as I had a very low CD4 for years after an advanced dx.

Cholesterol is 4.19 on the scale we use here in Ireland.  They tell me this is normal, and if it goes over 5, then further measures may be required.  No updates on yesterday on giving Statins to me as a preemptive measure as some of us discussed on here recently re fairly recent research. They took an extra blood vial to test current cholesterol levels which is good.

I've been peeing a bit weird lately, going more at night, and sometimes after a pee having to go back 5 minutes later to pee a bit more, so ID doc said he will send me for an ultrasound to check all is ok there. Probably will take months & months to get this appointment as waiting lists are very long in this country.

They asked if I'd consent to giving extra blood vials for some research they are doing. This is not uncommon at my ID clinic as it is in a teaching hospital so they are often asking us to consent to research studies. So I said sure, no problem, happy to help.

Got topped up with meds for another 4 months, & back in mid-June for next ID appointment.

All in all a good ID visit, and as always I made it an enjoyable day by getting in a big breakfast in the cafe near the clinic just before my midday appointment.

Offline Jim Allen

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Re: vampires
« Reply #212 on: February 15, 2024, 12:39:46 pm »
Went for my Vampires visit yesterday. It is every 4 months now.

All normal, still UD. My CD4 is 427, and it was over 400 at my previous visit which was last October. Pleased to hear this, that my Cd4 is trending upwards the last few months, as I had a very low CD4 for years after an advanced dx.

Cholesterol is 4.19 on the scale we use here in Ireland.  They tell me this is normal, and if it goes over 5, then further measures may be required.  No updates on yesterday on giving Statins to me as a preemptive measure as some of us discussed on here recently re fairly recent research. They took an extra blood vial to test current cholesterol levels which is good.

I've been peeing a bit weird lately, going more at night, and sometimes after a pee having to go back 5 minutes later to pee a bit more, so ID doc said he will send me for an ultrasound to check all is ok there. Probably will take months & months to get this appointment as waiting lists are very long in this country.

They asked if I'd consent to giving extra blood vials for some research they are doing. This is not uncommon at my ID clinic as it is in a teaching hospital so they are often asking us to consent to research studies. So I said sure, no problem, happy to help.

Got topped up with meds for another 4 months, & back in mid-June for next ID appointment.

All in all a good ID visit, and as always I made it an enjoyable day by getting in a big breakfast in the cafe near the clinic just before my midday appointment.

St James's Hospital?
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Offline Jim Allen

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Re: vampires
« Reply #213 on: February 15, 2024, 12:54:37 pm »
Went for my Vampires visit yesterday. It is every 4 months now.

All normal, still UD. My CD4 is 427, and it was over 400 at my previous visit which was last October. Pleased to hear this, that my Cd4 is trending upwards the last few months, as I had a very low CD4 for years after an advanced dx.

Cholesterol is 4.19 on the scale we use here in Ireland.  They tell me this is normal, and if it goes over 5, then further measures may be required.  No updates on yesterday on giving Statins to me as a preemptive measure as some of us discussed on here recently re fairly recent research. They took an extra blood vial to test current cholesterol levels which is good.

I've been peeing a bit weird lately, going more at night, and sometimes after a pee having to go back 5 minutes later to pee a bit more, so ID doc said he will send me for an ultrasound to check all is ok there. Probably will take months & months to get this appointment as waiting lists are very long in this country.

They asked if I'd consent to giving extra blood vials for some research they are doing. This is not uncommon at my ID clinic as it is in a teaching hospital so they are often asking us to consent to research studies. So I said sure, no problem, happy to help.

Got topped up with meds for another 4 months, & back in mid-June for next ID appointment.

All in all a good ID visit, and as always I made it an enjoyable day by getting in a big breakfast in the cafe near the clinic just before my midday appointment.

Anyhow, great lab results. Hope you are also feeling/doing well?

Best Jim
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Offline daveR

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Re: vampires
« Reply #214 on: February 16, 2024, 06:41:02 am »
Just got the results of my six monthly check up. happy to say that after the last 3 blood test showed small viral load blips I am now back to undetectable. CD4 count 899 at 44% so very happy with those figures.

I have slackened off on my fitness routine having now turned 61 and unfortunately it shows, back to being pre-diabetic, just, and cholesterol at 258 mg on a scale that says anything over 200 is bad. I explained to the doctor that 30 years ago the number was similar but she still politely told me to start working out again. Starting Monday.

The pleasant surprise was my serum creatinine levels, 1.1, completely normal after about 5 years of being around 1.3-1.35. So again happy with that also. The conversation then turned to my meds, currently taking a two pill version of Triumeq.
She suggested dropping the Abacavir due to possible heart complications, I have read about that on here, so I would have been on a two pill version of Dovato. I wasn't to keen on that and she wasn't fully sold on it as she wants me to be undetectable for another test before I go down to two drugs. Again I have read on here about a slightly increased failure rate on two drug regimes, the doctor was also aware of this, so as my Kidney function was now good she opted for Kocitaf, DTG, TAF and FTC. Keeps me on three drugs, one exactly the same and two the same family of drugs I take now so I went along with that one. I realise TAF is associated with possible cholesterol issues so have already started the diet change and will hit the gym as planned. Kocitaf has the additional advantage of being cheaper also. A win win for me.

All in all I am feeling great and hopefully will continue to do so.

All the best
Dave

Offline Jim Allen

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Re: vampires
« Reply #215 on: February 17, 2024, 03:55:23 am »
Just got the results of my six monthly check up. happy to say that after the last 3 blood test showed small viral load blips I am now back to undetectable. CD4 count 899 at 44% so very happy with those figures.

excellent lab results, congrats.

I have slackened off on my fitness routine having now turned 61 and unfortunately it shows, back to being pre-diabetic, just, and cholesterol at 258 mg on a scale that says anything over 200 is bad. I explained to the doctor that 30 years ago the number was similar but she still politely told me to start working out again. Starting Monday.

Sorry to hear about the pre-diabetic but hopefully you will get that under control. Good luck with the working out.

Quote
The conversation then turned to my meds, currently taking a two pill version of Triumeq.
She suggested dropping the Abacavir due to possible heart complications, I have read about that on here, so I would have been on a two pill version of Dovato. I wasn't to keen on that and she wasn't fully sold on it as she wants me to be undetectable for another test before I go down to two drugs. Again I have read on here about a slightly increased failure rate on two drug regimes, the doctor was also aware of this, so as my Kidney function was now good she opted for Kocitaf, DTG, TAF and FTC. Keeps me on three drugs, one exactly the same and two the same family of drugs I take now so I went along with that one. I realise TAF is associated with possible cholesterol issues so have already started the diet change and will hit the gym as planned. Kocitaf has the additional advantage of being cheaper also. A win win for me.

All in all I am feeling great and hopefully will continue to do so.

All the best
Dave

Great to hear you have an up-to-date doctor who understands your concerns and that you settled on a treatment you are happy to try. Good luck with the switch, keep us posted.
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Online Tonny2

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Re: vampires
« Reply #216 on: February 17, 2024, 06:44:33 am »



               ojo.               Hello there!… good numbers! .how about your cholesterol, you said your attorney 61 has your doctor suggested any cholesterol lower medication?. I think that my cholesterol is around same as yours even though I’m taking  a statin med and my doctor doesn’t seem to be concerned. I’m sorry about your pre-diabetic X. To tell you the truth and know anything about diabetes… keep up the good work and please keep us posted and again congratulations for those  envidable bloodwork results…hugs

Offline leatherman

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Re: vampires
« Reply #217 on: February 17, 2024, 08:52:13 am »
I love this thread! Only because it always gets a bump the week before I go to the doctor and get my blood work done. This is a great reminder. Thank you all for having labs around the same time I do and posting about them. LOL
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
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Offline daveR

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Re: vampires
« Reply #218 on: February 17, 2024, 09:48:33 am »


               ojo.               Hello there!… good numbers! .how about your cholesterol, you said your attorney 61 has your doctor suggested any cholesterol lower medication?. I think that my cholesterol is around same as yours even though I’m taking  a statin med and my doctor doesn’t seem to be concerned. I’m sorry about your pre-diabetic X. To tell you the truth and know anything about diabetes… keep up the good work and please keep us posted and again congratulations for those  envidable bloodwork results…hugs

Hi Tonny, she said she did not want to prescribe any additional medication other than my ARV's. I think she is expecting me to put in the hard work in the gym and kitchen. She did spot it though.

Dave

Online Tonny2

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Re: vampires
« Reply #219 on: February 17, 2024, 02:31:33 pm »



         ojo.           @DaveR…well, good luck and please keep us posted…hugs

Offline Loa111

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Re: vampires
« Reply #220 on: February 17, 2024, 06:39:50 pm »
St James's Hospital?
It’s Vincent’s I go.  I ended up at Vincent’s, as I went to A&E there nearly 6 years ago for violent coughing & got admitted, found out I’d pneumonia, then eventually got the poz news, so it became my ID clinic by default. It’s the only clinic I’ve ever attended. I like it there, know all the staff for years now & get really good help there.
Holistic ethos for us poz patients & always happy to check out other health issues that may affect us.

Offline Jim Allen

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Re: vampires
« Reply #221 on: February 19, 2024, 05:50:00 pm »
It’s Vincent’s I go.  I ended up at Vincent’s, as I went to A&E there nearly 6 years ago for violent coughing & got admitted, found out I’d pneumonia, then eventually got the poz news, so it became my ID clinic by default. It’s the only clinic I’ve ever attended. I like it there, know all the staff for years now & get really good help there.
Holistic ethos for us poz patients & always happy to check out other health issues that may affect us.

It's good that you are happy with the care they provide. Similar to the care I get, i'm in The Mater Hospital, whenever I get admitted for other issues the ID clinic get involved and even do rounds, during clinic visits if there is something I need even if it's unrelated to HIV they are happy to help.



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Offline Jim Allen

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Re: vampires
« Reply #222 on: February 19, 2024, 05:51:30 pm »
I love this thread! Only because it always gets a bump the week before I go to the doctor and get my blood work done. This is a great reminder. Thank you all for having labs around the same time I do and posting about them. LOL

😂 Have to admit everytime someone updates this thread I start scrolling back through it to see when my next appointment is.
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Offline leatherman

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Re: vampires
« Reply #223 on: February 19, 2024, 06:30:50 pm »
when my next appointment is.
Larry and I go Thurs after lunch. yipee.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

 


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