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Author Topic: Dropped 120 in CD4's and its grand :-)  (Read 1001 times)

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Offline JimDublin

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Dropped 120 in CD4's and its grand :-)
« on: October 07, 2016, 06:35:55 AM »
  ;)

I am sitting here waiting for my script to be filled after having my appointment this morning. (Writing from the mobile phone so forgive the spelling) Two updates or thoughts whilst I wait that I wanted to share, now I know I don't post often about my own lab work and results but still wanted to share this.

1st update Well an update and thought, here it is as routine as HIV care becomes and as many guidelines/protocols are published, each patient is different with different needs that needs to be asset.   With the general exception of "treating HIV is best, take your meds" . I also have to admit at times post that have "well my doc said X" tend to rub me the wrong way, i try not to show it as mod. My reason is simple whatever one doc said to you in the context of your individual care plan or situation is great for you, but ultimately meaningless to the rest of the world.

Anyhow to the update I get seen few weeks  >:(, now this sucks big time I hate having appointments every few weeks. Waste of my holiday days, I spent 10 already this year in talking half days off at a time going to appointments.  >:( >:( Well today I finally was moved to bi-yearly appointments and on top of that instead of having 2 appointments  1 for blood work and 2 weeks later 1 for results + scrips this has all been rolled into 1 appointment per time for me :)  :) Celebration tonight for me. 

2nd update I dropped 120 in CD4 count and I don't care, i did not even blink. Its about a level that I am happy with and for the rest I don't care its just a fluctuation. The only thing that matters is its about that level I am happy with and I have been and am UD. In other-words I take my meds, I stay adherent and move on with my life and will continue to do so. Reason i am sharing this last point is we often get people worrying about it for no real reason. Yes CD4's should be monitored from my point of view, no its not something to panic about as long as your in the "okay" zone.  That's my thinking anyway.

Jim

 
« Last Edit: October 07, 2016, 07:04:38 AM by JimDublin »
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Offline Wade

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Re: Dropped 120 in CD4's and its grand :-)
« Reply #1 on: October 07, 2016, 07:47:36 AM »
That's great  :)
Two visits and sets of labs is enough !  Just wait till you get older , they'll drag you in for all sorts of shit and HIV takes a back seat  :o
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Offline Ptrk3

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Re: Dropped 120 in CD4's and its grand :-)
« Reply #2 on: October 07, 2016, 09:03:52 AM »
Congratulations, Jim, it's grand news and thanks for sharing.  We need to keep the Administrator of the Forum healthy and happy ;)

One clarification question, how do they roll your blood work and "consultation and prescription meeting" into one, if I'm reading you correctly.  Do they get instant results of the blood test or do they use that blood test for your next semiannual consultation?

I'm asking because I'm down to semiannual consultation meetings but need to go in a week or so before for the blood tests.  In other words, I have two semiannual blood draws a year (to the hospital lab) and two separate semiannual consultation meetings with my infectious disease (ID) doctor, so four appointments in total per year to monitor my HIV infection.  The hospital lab forwards my test result to my ID doctor, so I get my test results when I see him.
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Offline JimDublin

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Re: Dropped 120 in CD4's and its grand :-)
« Reply #3 on: October 07, 2016, 09:16:15 AM »
 ;)

Thanks and its a really good question.

So they will presume the result from the last labs will yield the same or similar result at the appointment as I have been stable and adherent for so long unless at the meeting I raise an issue. Than new bloods are taken and if any red flags do come up I will be called in otherwise I see them again in 6 months time  :)

I had to promise to stop taking other prescription drugs without checking with them and to call in any issues/illnesses (touch wood ill have none) in-between so they are aware and can ask me to come in sooner if they think its needed.

That's all fine by me as I am not nervous about my results. I suppose when you think about it there is a bit of presumption that the results are going to stay good. So this way of doing things might not suit everybody but it really works for me and it means they can spend more time and energy with patients that need it.

 :) :) :) I am really pleased with this, its even a better feeling that being UD for the first time.

Jim
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Offline Ptrk3

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Re: Dropped 120 in CD4's and its grand :-)
« Reply #4 on: October 07, 2016, 09:31:11 AM »
Thanks for the clarification. Yes, that makes sense to me and a good way to cut out  unnecessary visits.

Unfortunately, my ID doctor (or his office) doesn't do blood draws, so I need to get those done separately.  But four total visits a year (two blood draws at hospital, two consultations with ID doctor) isn't that onerous, all things considered.

Cheers.
 
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Offline Lightfighter

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Re: Dropped 120 in CD4's and its grand :-)
« Reply #5 on: October 07, 2016, 12:04:28 PM »
My doc is like Jims. I do my appointment then have labs and they mail me the results and I can see them online. I'm 100 miles away from my doc so it helps only having to make a one stop shop visit.

Congrats on your new protocol Jim. I'm sure you're relived about it.

Offline gcr.mty.mx

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Re: Dropped 120 in CD4's and its grand :-)
« Reply #6 on: October 07, 2016, 03:59:03 PM »
My clinic does 20 scheduled blood draws everyday from 7am to 7:40am, so even if I'm the last one I'm out of there by 8am tops and get to work early. I go three weeks before my consult appointment.
Consult appointmnets are from 8:20 am to 2pm so I can choose the first appointment or the lunch time appointment.  I have not missed a minute of work throughout my process which is awesome.

I know my CD4 from my first test but they only processed my viral load for the first follow up simply because there was no budget for CD4. Since the VL came back UD doctor mentioned CD4 is not important. Better for me, I don't have a reason to stress, I'm just happy to be UD.

Stay strong everyone.

G



01/16 diagnosed
03/16 cd4 750 VL 150,000
03/16 truvada+ritonavir(norvir)+reyataz
06/16 cd4 -- VL UD!
09/16 truvada+ritonavir(norvir)+duranavir(prezista)

Offline JimDublin

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Re: Dropped 120 in CD4's and its grand :-)
« Reply #7 on: October 07, 2016, 07:18:57 PM »
My doc is like Jims. I do my appointment then have labs and they mail me the results and I can see them online. I'm 100 miles away from my doc so it helps only having to make a one stop shop visit.

Congrats on your new protocol Jim. I'm sure you're relived about it.

That's, oh man very relived  :) Next to reduced stress of having to go to the appointments with the now reduced visits planned I can instead of spending my vaccination time on hospital appointments next year head over to Portugal and Holland instead for a proper holiday with the kids  :)

My clinic does 20 scheduled blood draws everyday from 7am to 7:40am, so even if I'm the last one I'm out of there by 8am tops and get to work early.

That is highly efficient compared to the service here, I have to say.  Congrats on not missing any work as well. Nice one.

Jim


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Offline harleymc

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Re: Dropped 120 in CD4's and its grand :-)
« Reply #8 on: October 08, 2016, 07:34:10 PM »
I just get a text message from my ID clinic with my results.
Once I have my results I can decide if I need a second appointment (haven't needed a follow up since recommencing medications 5 years ago).

Offline CaveyUK

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Re: Dropped 120 in CD4's and its grand :-)
« Reply #9 on: October 11, 2016, 08:58:24 AM »
Hi Jim

I think it's really important that just because you are a mod, you shouldn't exclude yourself from weighing in with any observations or concerns you may have. When you became a mod (which you do a fine job of, by the way), you didn't stop having HIV or having the need for support or desire to contribute as a community member, so I'm pleased you have updated us.

It's also true that as long as CD4 is in the "normal" range then fluctuations are not important, even though I know from experience that there is still a level of anxiety attributed to these blood tests. It's one of the reasons I think less frequent testing of CD4's or even NO testing of CD4s once in normal range, which is fast becoming the norm, is actually a good thing. If people focus on keeping their VL undetectable, then the CD4's are immaterial. The more we keep testing for the blessed things though, the more anxiety everyone has about small shifts.

Good news on the twice yearly appointments. I suspect I will be moving to this frequency myself shortly (I have already been offered it by my doctor). Sucks that you have to take annual leave for your clinic visits though. I guess I am lucky at the moment in that I can choose to work from home on clinic days, and just make the time up.

As for the mechanism of testing/follow-up, I have a clinic visit with either the doctor or nurse-specialist, at which point I chat about prior results of if anything is bothering me. I then have bloods taken and I get told VL/CD4 by text and don't need to go back in unless there is any specific concern. I had this recently, where I was contacted to be told about my blood-sugar level, and was given some advice to talk to my GP (which I haven't done yet, but I was waiting until my holiday to Vegas was done, which I'm just back from). It would be nice to have the various up-to-the-minute numbers to talk about at the clinic appointments, but having two appointments would be a pain, and there is huge variability about time taken for various tests to be processed so scheduling the follow up meeting would be reliant on guesswork anyway!

Diagnosed 29th Dec, after Home test 27th Dec 2015
29th Dec 2015 - CD4 160, VL 70,363, CD4% 16
Started Septrin 31st Dec & Tivicay/Truvada 12th Jan 2016
9th February 2016 - CD4 245, VL 96, CD4% 19
8th March 2016 - VL 61 (no CD4 taken)
5th April 2016 - CD4 354, VL  - UD (<40), CD4% 22
5th July 2016 - VL - UD (<40) (no CD4 taken)
13th September 2016 - CD4 432, VL - UD (<40), CD4% 28

Offline JimDublin

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Re: Dropped 120 in CD4's and its grand :-)
« Reply #10 on: October 11, 2016, 05:21:52 PM »
Vegas, nice!
Did you enjoy it? Win anything? :)
Good to hear you have been offered bi-yearly as well.

Blood sugar levels, hope all is okay and the follow-up with the GP goes well
I had pre-diabetes myself a few years back but diet changes has helped kept it in check, lucky me.

Not sure on the more testing more anxiety on small shifts, I think this varies per person, and with any illness you will have people that worry more than others, but i do see how some people are more prone to worrying about it. Its part the reason why i posted, had see a few threads on the topic more recently.

One of the reasons i normal don't share my numbers or results is i personally don't really care or worry about it. Not much I can do about them, other than take my meds to keep the VL UD :)

Jim
HIV 101 - Index & everything you need to know
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline CaveyUK

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Re: Dropped 120 in CD4's and its grand :-)
« Reply #11 on: October 12, 2016, 10:48:19 AM »
Vegas, nice!
Did you enjoy it? Win anything? :)

Loved it! Did I win? No...the opposite...but it was great fun anyway. Vegas always is. Love the place.

Quote
Blood sugar levels, hope all is okay and the follow-up with the GP goes well
I had pre-diabetes myself a few years back but diet changes has helped kept it in check, lucky me.

Yeah, thats what the doc says mine likely is as my levels are hovering around the 7.2 mark. I've joined a gym though and will be adjusting my diet. I've also bought a glucose monitoring device so I can keep tabs on the levels to ensure they are not spiraling out of control. Once I'm back a few weeks, I will see the GP - assuming I don't see things improving significantly on the home testing front.

I'd like to arrest the situation myself personally, and there is a practical reason for this as if I delve straight down the GP route then I could be prescribed Metformin, which would need adjustment along with my HIV drugs, as there is an interaction with Dolutegravir which can change the levels of the Diabetic drug. Just something I'd rather avoid if I can :)
Diagnosed 29th Dec, after Home test 27th Dec 2015
29th Dec 2015 - CD4 160, VL 70,363, CD4% 16
Started Septrin 31st Dec & Tivicay/Truvada 12th Jan 2016
9th February 2016 - CD4 245, VL 96, CD4% 19
8th March 2016 - VL 61 (no CD4 taken)
5th April 2016 - CD4 354, VL  - UD (<40), CD4% 22
5th July 2016 - VL - UD (<40) (no CD4 taken)
13th September 2016 - CD4 432, VL - UD (<40), CD4% 28

 


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