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Author Topic: Quarterly Blood Work  (Read 3305 times)

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Online kentfrat1783

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  • Posts: 188
Quarterly Blood Work
« on: September 07, 2017, 06:04:36 pm »
Hi All,

Well I finally went and did my quarterly blood work today.  I'm going to consistently do the blood work in the morning as I've heard that it can very from different parts of the day.  I want consistent results.

I had guessed they were going to take 7 viles of blood but ended up being 8 (not a bad guess).  And from what I've counted so far they are doing 47 different tests and I think a few are being sent out so not sure how many more that will add to the list. 

All I can say is I am thankful that I have insurance but I still worry about those that don't have it or those that can't afford their deductibles/co-insurance.  I know there are programs to help but the cost is big.

But onto the actual question, is getting 50's tests/results done every 3 months normal or is this just due to me being recently Dx'd?  I am taking Atripla and I know the ID doctor is also making sure my liver/kidney counts are still decent. 

In the end I will know way more then I ever wanted to know about blood work and results. 

It'll be interesting to see the results as they come in.

Kenneth
05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Offline Ptrk3

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Re: Quarterly Blood Work
« Reply #1 on: September 07, 2017, 07:41:07 pm »
Once you are undetectable and your CD4's improve, your blood tests typically will occur every six months.

Since you were diagnosed with PCP, CD4's of two, and a six figure viral load, your healthcare provider will order tests every three months in order to assure that your Atripla regimen is working, so, yes, given your circumstances it is normal that you are so tested (at this time).
HIV 101 - Basics
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 pittman

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Re: Quarterly Blood Work
« Reply #2 on: September 07, 2017, 09:23:43 pm »
Yeah, as your numbers get better generally fewer visits per year are needed, and fewer tests.

If you are just starting meds, I wonder why Atripla? It's not "bad" at all, I was on it for years, but I understand that most first line treatments are moving to combos with a version of Tenofovir that is easier on the kidneys.   Next time you speak to your HIV specialist you may want to discuss that and see what they think.

If copays and out of pocket expenses are a factor, make sure to look into assistance  programs from the drug manufacturers. When I switched from Atripla to Triumeq I was able to go online and fill out a quick form that covers all of that for me.

Atripla has one too, though last time I looked there were also income restrictions for it. 

At least for my current copay assist program, it even counts towards my over all deductible and max out of pocket limit.

Offline Tonny2

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Re: Quarterly Blood Work
« Reply #3 on: September 07, 2017, 09:32:15 pm »


          ojo        Hello there...Good luck with the vampire's results and yes, just because you are a newbie and started treatment, plus having so low cd4s, the doctor ordered so many test...as you get stable, your visits to "Dracula" will be less frecuent...If you live in the USA, why is your doctor giving you atripla?, there are newest combos.

Please take care of what you eat and where you eat, having a very low tcell put you a risk for OIs. Keep an eye on your eyes, if you see floaters, let your doctor know about it asap...wishing you the best and please keep us posted...hugs

Offline 2tcells

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  • Posts: 255
Re: Quarterly Blood Work
« Reply #4 on: September 08, 2017, 11:29:01 pm »
hey my cd4 twin! I had 2 when I started also im past 300 now but havnt updated my thing below.i still get my bloodwork done every 3 months, when I started they did it every month. were u in the hospital? how long did they guess you had it before dx? about 2-4 weeks after I started meds I havnt been sick once except shingles, ask if you should get the vaccine and get pneumonia vac and flu (not live virus)
7-4-13 diagnosed   cd4- 2      vl-220,600
8-3-13                     cd4- 4      vl- 448
9-3-13                     cd4- 40    vl- ud
11-3-13                   cd4- 54    vl-ud
1-9-14                     cd4- 62    vl- 43
4-3-14                     cd4- 110  vl-ud
8-5-14                     cd4- 95    vl-ud
9-23-14                   cd4- 97    vl-ud
1-22-15                   cd4- 156  vl-ud
4-14-15                   cd4- 122  vl-ud
6-12-15                   cd4- 148  vl-?
8-15-15 start stribild
9-3-15                     cd4- 152 vl-ud
11-25-15                  cd4- 211 vl-20
2-17-16                   cd-4 194 vl-ud
4-1-16 start genvoya
5-10-16                   cd-4 220 vl-ud
9-19-16                   cd-4 182 vl-ud
12-2016                  cd-4  267!vl-ud
cd-4 stays around 250-300 now

Online kentfrat1783

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Re: Quarterly Blood Work
« Reply #5 on: September 09, 2017, 07:58:35 am »
Hey Twin,

How are you doing today?  Hope well. 

Well the start of this year all I wanted to to was go to bed earlier and earlier every night.  I thought it was from working 12-14 hour days but wasn't totally over that.  Then the start of April I was having breathing issues, extreme night sweats and feeling lousy so went to my Dr (ended up being 4 times that month).  They were running blood work and couldn't figure out what was going on.  I then went to the ER and they said I have pneumonia and gave me a Rx and had me leave.  Well a week later I had a followup with my doctor from the ER visit and I could still barely breath so they wheeled me to the ER.  At this point the ER doctor immediately admitted me even before seeing me.  In the end turned out I had PCP, slightly weak heat and liver issues (and a few other things). 

The ID doctor had a hunch I was positive and had PCP.  Well he done blood work and his hunch was confirmed.  I was in the hospital for 7 days and started on Atripla probably about a month after I got out of the hospital.  Just the fun of the ID doctor followup and getting the Rx mailed to me. 

I have felt OK since starting the medication but my ID doctor has be on restrictions like not being in large groups, not being around kids 5 and under and on a neutropenic diet.  I do my best at following those restrictions but not eating fresh like I was doing prior is hard.  Just not sure when they will be lifted.

They think I have been infected for a good 5-6 years but had an HIV test 6 years ago (almost to the day) for a life insurance policy and I was negative then.  And since then my sex life hasn't been elaborate so not sure when it happened but it happened. If I was only recently infected I really got hit hard and my system just stinks. 

I have an appointment on the  26th of this month and I have a list of vaccine's to ask if I should get them.  What is funny if I schedule the flu shots at work each year but going to get it in the doctors office just so there is a clear record of it and do the other ones as well.

It is awesome the your CD4 count is above 300 now.  I am sure you are happy for that but from what I seen it does take a while.  Any potential advice on what helped or didn't help you?

Thanks,
Kenneth
05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Offline wardp

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Re: Quarterly Blood Work
« Reply #6 on: September 09, 2017, 08:25:23 am »
Hope all goes well for you, I shall also be asking about a shingles vaccine at my next doctors visit, I am having lab work on Monday, lipids , creatine blood sugar, liver, CBC, urine, 5 weeks on atripla , will be happy to share results, paul
Diagnosed 20,July 2017. Cd4 289, 21% vld 3000. Started atripla 4 Aug 2017 5oct 2017 cd4 384 21%, vl ud less than 20. Switch to complera 4 Nov 2017 switched to stribild 15 the Nov. Switched to truvada efavirence 200mgx2 14 Dec 2017, 2 Feb 2018, us cd4  466, 25%  CD 8 ,595, 32%..1 may 2018
switched  to instgra truvada.

Online kentfrat1783

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Re: Quarterly Blood Work
« Reply #7 on: September 09, 2017, 08:37:04 am »
Hi Paul,

Hope all is going well since you are taking Atripla.  The first month was OK for me but the second month is when I had the most weird dreams.  They settled down after that. Also hope your blood work goes well. 

I just wish there was an easy fact sheet to explain all of the tests.  I know you can Google them but some seem like they are tested multiple times but just a different way of getting a result back.  Maybe it would be a good idea to take a medical lab course or two. 

Wishing you the best.

Kenneth
05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Offline 2tcells

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  • Posts: 255
Re: Quarterly Blood Work
« Reply #8 on: September 09, 2017, 04:52:44 pm »
I didn't have any restrictions about diet or large groups of people or anything. but I was kinda freaked out about my low numbers and at first would have hand sanitizer and a face mask until I went to the dr and he said there was no need to use a mask or be that worried about it. but its a good idea to wash your hands to keep germs away just like anyone else. I took Bactrim and fluconazole for awhile with my meds to keep the pcp away. I had the pcp, thrush, rashy skin, cough, hurting lungs, fatigue, weight loss and all when I found out too and stayed in the hospital for a week. just take your meds and you will be fine. 
7-4-13 diagnosed   cd4- 2      vl-220,600
8-3-13                     cd4- 4      vl- 448
9-3-13                     cd4- 40    vl- ud
11-3-13                   cd4- 54    vl-ud
1-9-14                     cd4- 62    vl- 43
4-3-14                     cd4- 110  vl-ud
8-5-14                     cd4- 95    vl-ud
9-23-14                   cd4- 97    vl-ud
1-22-15                   cd4- 156  vl-ud
4-14-15                   cd4- 122  vl-ud
6-12-15                   cd4- 148  vl-?
8-15-15 start stribild
9-3-15                     cd4- 152 vl-ud
11-25-15                  cd4- 211 vl-20
2-17-16                   cd-4 194 vl-ud
4-1-16 start genvoya
5-10-16                   cd-4 220 vl-ud
9-19-16                   cd-4 182 vl-ud
12-2016                  cd-4  267!vl-ud
cd-4 stays around 250-300 now

Online kentfrat1783

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Re: Quarterly Blood Work
« Reply #9 on: September 09, 2017, 05:20:26 pm »
I never used a face mask but I do wash my hands a lot and use hand sanitizer often and even after someone shakes my hand.  I work in HR so I have to be polite but so far no one blinks an eye when I go right for the bottle of sanitizer. 

I'm also on Bactrim and Zythromax (sp?), allergy medication and a multivitim and have been doing much better then I was prior.  BTW sounds like our conditions prior to going into the hospital were very similar. 
05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Online kentfrat1783

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  • Posts: 188
Re: Quarterly Blood Work
« Reply #10 on: September 11, 2017, 05:52:36 pm »
Hi All,

Well I've been reviewing over my labs as they have came in and a of the numbers are getting back to where they should be.  Some numbers are still way off but better then they were.

I did get my updated CD4 count and it's 42 (6%).  Still not where I wanted it to be but can't expect everything.

Not sure of my viral load yet as that's the one number I can't figure out by my results. 

Thanks for putting up with me. 

Kenneth
05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Offline Ptrk3

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Re: Quarterly Blood Work
« Reply #11 on: September 11, 2017, 06:04:50 pm »
Your Viral Load numbers on a lab report should look something like this (if you are undetectable):

HIV RNA QUANTITATIVE   
HIV PRC QUANT   NOT DETECTED copies/mL   
Range: NOTD
LOG 10 HIV   NOT DETECTED copies/mL   
Range: NOTD
Comments: No HIV 1 RNA was detected in this specimen. The lower limit of detection of this assay is about 40 HIV RNA copies per mL. A negative result does not rule out the possibility of a viral load below the detection limit of the assay.

This result is a quantitative estimate of HIV 1 RNA copies per mL of plasma, determined by a PCR based method. Assay performed using the Abbott RealTime HIV 1 assay.

******
As long as your CD4 count is improving (and the percentage), which it is (an absolute count improvement from 2 to 42), you are doing well, since it means that your Atripla is working.  Remember, your short term goal is to attain an "undetectable" viral load.

Feel free to post on these forums as often as you like:  it is here to support you and to provide you with the guidance and information you need to live a long and healthy life and to reach your full potential.
HIV 101 - Basics
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

Online kentfrat1783

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Re: Quarterly Blood Work
« Reply #12 on: September 11, 2017, 06:12:59 pm »
Thanks Ptrk3,

None of those items are showing up on my lab results that I can see right now, nor did they show up prior.  I have signed up for Quest Diagnostic where my CD4 #'s come from (well at least from what I can tell) so I am hoping once they update there site I will be able to see it. 

I'll be asking my ID doctor about it when I see him at the end of the month about my VL and also where I can see it. 

Just glad there is this forum. 

Kenneth
05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Offline pozguy909

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  • Posts: 27
Re: Quarterly Blood Work
« Reply #13 on: September 11, 2017, 08:43:47 pm »
Hi Kenneth,

Thank you for sharing your results.  It has made me more hopeful for myself seeing that you are improving. 

My cd4 was last measured at 17, 271000 vl.

Granted I have not been on treatment as long as you (and on genvoya), I know there is hope.  I have also been feeling great since going on treatment 3 weeks ago.

Hope your VL is nearing undetectable!
Dx - 8/8/17
1st test - 8/10/17 - VL 337000 CD4 27
8/18/17 - Vl 277000 CD4 17 Started Genvoya, Bactrim and zithomax
9/27/17 - VL 240 CD4 108

Online kentfrat1783

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  • Posts: 188
Re: Quarterly Blood Work
« Reply #14 on: September 11, 2017, 09:47:00 pm »
I'm glad that you have been feeling great. Just sticking to the pill regiment for a few weeks and then it becomes second nature. I do set alarms on my phone to remind me still.

Just ask your doctors questions and don't feel like any question is silly. They might have heard it a hundred times but you've only thought of it once.

This forum had also helped me a lot.

There is hope and things so get better.

Wishing you the best in this new chapter of our lives.

Kenneth
05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Online kentfrat1783

  • Member
  • Posts: 188
Re: Quarterly Blood Work
« Reply #15 on: September 12, 2017, 05:24:44 pm »
Hi All,

I finally got my VL results today.  I'm at 51 so I can be happy with that. 

My CD4 is still at 42 but I knew that the other day so still not liking that number but it is going in the right direction.

Now just to understand some of the other test results.  Looks like I will be getting some more blood work in my near future.

Kenneth
05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Offline Ptrk3

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Re: Quarterly Blood Work
« Reply #16 on: September 12, 2017, 05:46:02 pm »
Yes, you should be happy.  Your viral load is virtually undetectable and surely will be by the time of your next scheduled blood work.  You are definitely heading in the right direction!
HIV 101 - Basics
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

Online kentfrat1783

  • Member
  • Posts: 188
Re: Quarterly Blood Work
« Reply #17 on: September 12, 2017, 06:14:32 pm »
Thank you Ptrk3,

I had some other test ran that weren't done before and came up out of range but can't have everything in range I guess.  Sure would be nice if everything was in range.  Right?

Now that I've got these test results and didn't know about the online Quest diagnostic system before I'm going to spend the $9.99 and get all of my prior test results.  Just want to have a record of it if I should ever need it in the future.   

But yes by the time I get my next round of blood work for the VL it should be undetectable.  I'd be shocked if it wasn't. 

Kenneth
05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Offline Ptrk3

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Re: Quarterly Blood Work
« Reply #18 on: September 12, 2017, 07:06:27 pm »
You're welcome.  Keep up the good work, adhere to your regimen, maintain an optimistic outlook, and you will continue to live a long and healthy life!
HIV 101 - Basics
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

Online kentfrat1783

  • Member
  • Posts: 188
Re: Quarterly Blood Work
« Reply #19 on: September 13, 2017, 05:38:00 pm »
Awesome.  I just got the initial lab results from Quest and it's interesting. 

I never realized that my doctor ran an HIV test on me back in March of 2011.  The HIV-1 test came back as "Not indicated" and HIV-2 was "Nonreactive".  I do remember back then I was having some odd issues but not shocked that she tested for it.  But curious on why it says "Non indicated" when I see everything as being reactive or nonreactive.

So I had 2 HIV tests that year about 6 months apart so I am pretty sure it was after then that I got infected.  I had another one that year for a life insurance policy and have the results from that as well saying I was negative. 

Also got my actual VL count to start and it's basically what the doctor said.  He said 160,000'ish but it was 169,969.  In addition there is some Novel Mutations Detected but I am thinking that is normal but no evidence to drug resistance so that is good.

But the important thing is my numbers are getting back to where they should be.  Not as fast as I'd want them to be but oh well.  Worse things could have happen. 
05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Offline Mightysure

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Re: Quarterly Blood Work
« Reply #20 on: September 14, 2017, 10:32:47 am »
Not indicated COULD mean that you were reactive on ERISA but no bands showed up on the confirmatory Western Blot. You're in the US. You can view your medical file and see what they did.

Im glad you're doing well and staying positive (no pun intended). It's odd though that you have no drug resistance and your doctor chose Atripla. It's side effect profile compared to newer drugs makes is a less optimal choice, but it still works.

Online kentfrat1783

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Re: Quarterly Blood Work
« Reply #21 on: December 10, 2017, 08:01:15 pm »
Hi,

I figured I would just keep everything in the same thread for my quarterly blood draws.

Well it's that time again tomorrow.  My doctor appointment was moved up a few days so I'm going to get the blood work dealt with tomorrow morning before work.  Lets hope my numbers are going up/down as they should be. 

He is having a few other STD/I tests re-ran and he wasn't comfortable with the results that were presented to him.  The hospital didn't give him the count, but just if it was re-active or not re-active. 

Let's hope for good results but I'm having a feeling I'll be getting some shots over the next few weeks.  Oh what run.  LOL

Thanks for everyone on this forum and the great support. 

Kenneth
05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Online kentfrat1783

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Re: Quarterly Blood Work
« Reply #22 on: December 14, 2017, 09:26:49 pm »
Well if I read my results correct my CD4 is only up to 60 and at 8%.  I'm in the upward direction but hoped I was at least 100. 

Didn't make me feel the best but not surprising. 
05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Offline pozguy909

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Re: Quarterly Blood Work
« Reply #23 on: December 14, 2017, 09:50:32 pm »
Hey Kent,

Im in your same boat.   I just hot my recent labs back.  I'm 30 copies so still detectable, and my cd4 went up only by 13, but the %went up 3.3? I think
Dx - 8/8/17
1st test - 8/10/17 - VL 337000 CD4 27
8/18/17 - Vl 277000 CD4 17 Started Genvoya, Bactrim and zithomax
9/27/17 - VL 240 CD4 108

Online JimDublin

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Re: Quarterly Blood Work
« Reply #24 on: December 15, 2017, 03:20:49 am »
Well if I read my results correct my CD4 is only up to 60 and at 8%.  I'm in the upward direction but hoped I was at least 100. 

Didn't make me feel the best but not surprising.

More importantly feeling prehaps disappointing aside for the moment how are things going? How do you feel?

What I see is you are clinically UD (Below 50 copies) and that is great so the treatment is working and your CD4 counts of 60 well, it seems they are 60 hard working ones so that's good as well. 

I know its can be disappointing when you have an exceptions that for whatever reason fall short of exceptions or hopes, however focusing on something that to be frank you simply don't have control over, is prehaps setting yourself up slightly. Just a thought to prehaps re-focus on what you can control.

Jim   
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Re: Quarterly Blood Work
« Reply #25 on: December 15, 2017, 11:29:15 am »
Hi Jim,

You ever seen the movie "Rent"?  I kinda feel like the episode that they sang "Life Support" in.  I am feeling OK but have been quite moody this week but then woke up today feeling sick.  I am thinking what I ate for dinner last night didn't settle well for me as I tried to see if I could add it back into my diet but the answer is "no". 

I was also worried about my O2 level this morning but I checked that and was just fine. 

Now I'm just waiting for my two doctor appointments next week to see what they say.  I do know my soldiers (CD4) will take time to multiply but I'm impatient.  I still haven't seen my VL results but with the % going up I am thinking I am now UD. 

Lets hope I start feeling better today. 

Kenneth
05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Online JimDublin

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Re: Quarterly Blood Work
« Reply #26 on: December 16, 2017, 06:44:58 am »
Hi Kenneth.

Sorry to hear the food item did not agree with you, personally i hate when that happens particularly if i enjoyed eating it. Live and learn right

Quote
I was also worried about my O2 level this morning but I checked that and was just fine. 

Glad its okay. I do wonder why the concern? Something must have triggered you to check right. I know from other posts the pneumonia was a issue when you were diagnosed.

Question for you.

Do you talk to anyone face to face like peers or therapists about how you are feeling and/or how the diagnosis has impacted you?

Jim
« Last Edit: December 16, 2017, 06:49:25 am by JimDublin »
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Re: Quarterly Blood Work
« Reply #27 on: December 16, 2017, 07:44:47 am »
Jim,

Yes I do have a few close friends that I talk to about all of this.  They are cool with me just talking about it and explaining what I have learned and going through.  They are also very supportive so that does help.

My ID doctor has me on two antibiotics to keep the pneumonia away so I normally check my O2 level about every two weeks.  I try not to be paranoid or obsessive about checking it more that.  My breathing just felt a bit different when I woke up but was more just dealing with the stomach bug I had, as the numbers were fine.

I also talked with a few people from work yesterday and they also woke up with a stomach bug so I think something was going around work.  I was just another lucky one to get the bug as well.  I'm just glad I woke up this morning and feeling much better. 

BTW how have you been?  Hope doing well.

Kenneth
05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Online JimDublin

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Re: Quarterly Blood Work
« Reply #28 on: December 16, 2017, 08:15:52 am »
Stomach bug nasty but happy to hear you are feeling better.

I am pleased to hear you have people you can talk to and that it has been helping you. I think we often as a group overlook how important that can be.

Quote
BTW how have you been?  Hope doing well.

I'm grand thanks :) Just packing my bags for the flight back home.

Jim
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Re: Quarterly Blood Work
« Reply #29 on: March 05, 2018, 05:40:55 pm »
Hi,

I know this thread is a bit old but still want to keep it active for a little bit more. 

I went to get my blood draw done today and actually went to LabCorp to do it other then the hospital.  My ID doctor actually told me to stop going to the hospital as they keep messing up what needs to be ran. 

It did kind of stink having to drive 25 minutes to LabCorp other then 3 minutes to the hospital but I was shocked at the difference in the cost.  When I got the blood drawn last (when the hospital done all the correct tests) my bill prior to insurance was nearly $1,100 and adjusted to just under $950.

Well when I went to LabCorp the cost was only $120 and my part will be roughly $21. 

If it actually comes through that way (as I have documentation showing that is what it will be) I will be pleased. 

I'm just shocked at the difference in costs.  It's crazy. 

Now onto a different note...I sure hope my numbers come back good.  I'm sure they will but still waiting for my one number to be over 100.  But I'm thinking I'll be poked a lot after that.  LOL

Thanks for reading and being their.

Kenneth
05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Offline Wade

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Re: Quarterly Blood Work
« Reply #30 on: March 05, 2018, 06:04:52 pm »
Kenneth... sounds like you're doing just swell  :)

With an attitude like yours, your numbers will get there don't you worry.

Looking forward to hearing about all that poking... ;D

Wade

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Re: Quarterly Blood Work
« Reply #31 on: March 05, 2018, 06:11:40 pm »
Hi Wade,

Just wish it was good poking. :)

My ID doctor said he wanted me to get some immunizations once my CD4 number gets above 100.  Not sure what they are or if he will still want to do it but I could only imagine.  I just have an odd feeling it's going to be shots and not a pill. 

Then again once my levels get to a good point I think he will start trying to figure out my low iron level.  He is hoping once my CD4 gets into a correct range a lot of my other issues will level out.  If not I'm sure he will have some good tests lined up. 

I'll keep you posted. 

Kenneth

05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Offline Wade

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Re: Quarterly Blood Work
« Reply #32 on: March 05, 2018, 06:16:21 pm »
They will be shots indeed and that's a good thing that's what is next.

Still want the details on the good poking ;)
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Re: Quarterly Blood Work
« Reply #33 on: March 09, 2018, 05:01:53 pm »
Well I got my results today:

CD4 is now up to 90 and VL is officially undetectable. 

Now just waiting for my doctors appointment in a few weeks and see what he decides to do.
05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Online JimDublin

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Re: Quarterly Blood Work
« Reply #34 on: March 09, 2018, 07:44:54 pm »
Congrats on the good results!
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Re: Quarterly Blood Work
« Reply #35 on: March 09, 2018, 08:31:02 pm »
Thanks Jim. 

I was actually only expecting 80 so when I seen 90 I was excited.  Almost to triple digits.  :) 

As you said and others on here things do get better and half the time I don't even remember taking the pills. 

I'm feeling better and that is what matters.
05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Online kentfrat1783

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Re: Quarterly Blood Work
« Reply #36 on: March 25, 2018, 08:11:59 am »
Well I had my followup appointment this past Thursday and it went as I expected.  My doctor was happy that my count is up to 90 but wasn't happy with my cholesterol level.  He said I need to exercise (doing) and eat healthy (but how is the issue).  If I was allowed salads, all fresh fruits/vegetables it would be so much easier.  I think I'm just going to go grocery shopping and hope that I can find healthier pre-packaged meals for work. 

As I mentioned prior he does want me to get some immunizations once my level hits 100.  (I kinda thought 90 was close enough but he didn't).  If I heard him correct he wants me to get a Tetanus and the Meningitis shot.  My next appointment should be fun. 
05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Offline bocker3

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Re: Quarterly Blood Work
« Reply #37 on: March 25, 2018, 12:59:44 pm »
Kentfrat -

I have to say that you are the first person that I have heard being told to avoid all fresh fruit/vegetables.  It seems, IMO, complete overkill (however, I am not a doctor and am not saying you should ignore his advice).  Have you pressed him about this -- what is the root of his concern -- assuming that one can wash these foods before eating, it seems the risk of bacteria/virus infection isn't all that high.

At a minimum, you can cook fresh vegetables, which should alleviate concerns.  Heck, even some fruits -- roasted peaches, baked apples, etc.....

At what point does he say you can eat these things again?

Mike
Atripla - Started 12/05
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Labs - Pre-Meds
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Nov05 288/18%  47,564
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May2015 969/28% <20

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Re: Quarterly Blood Work
« Reply #38 on: March 25, 2018, 01:06:13 pm »
Hi Mike,

I do cook the fresh fruits and vegetables and that is acceptable. He is just overly anxious on the possibility of infection of the food not being cooked.  I am thinking once I hit 100 things will start to be lifted. 

Even a few months ago I had a steak that was medium well (I'm not supposed to have it unless it's well done) and I was sick for the next two days. 

It will take time for my body to adjust and I will be questioning it a lot more during my new appointment in June.

Thanks,
Kenneth
05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Online JimDublin

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Re: Quarterly Blood Work
« Reply #39 on: March 25, 2018, 01:12:42 pm »
Yeah just reading this now, have to agree with Mike.

Its first time I've ever heard this,. I've heard about undercooked or raw foods but that's in relation to raw meat/eggs but fruit and vegetables never in fact always been told to eat plenty of them.

Jim
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Offline Tonny2

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Re: Quarterly Blood Work
« Reply #40 on: March 25, 2018, 03:23:28 pm »
Hi Mike,

I do cook the fresh fruits and vegetables and that is acceptable. He is just overly anxious on the possibility of infection of the food not being cooked.  I am thinking once I hit 100 things will start to be lifted. 

Even a few months ago I had a steak that was medium well (I'm not supposed to have it unless it's well done) and I was sick for the next two days. 

It will take time for my body to adjust and I will be questioning it a lot more during my new appointment in June.

Thanks,
Kenneth

        ojo       hello there. i, like jim, never heard of cooking vegetables and fruits...i live with aids for five years, no cd4s, i did eat fruits, my vegetables, were desinfected and washed with bottle water...i guess you or your doctor are exagerating or being too catious...well, i wish you the best and i hope your soldiers increase soon, just hang in there...hugs                                                             ojo

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Re: Quarterly Blood Work
« Reply #41 on: March 25, 2018, 03:48:01 pm »
Hi,

I wish I was lying or exaggerating.  The specialist I go too is highly recommended in my area so I have no real need to think he is crazy.  Those that recommend him are other nurses from multiple different practices through multiple hospitals in my area.  The nurses are always the most honest.  Even my sister that is a nurse recommended him.  I don't think I've ever heard her recommend a specialist.

I honestly think that since I started so low on so many different blood tests and found other issues that they hope will correct themselves as my soldiers increase, is why they are being so cautious.  He did say as I got above 100 thing would be changing with my Rx's so I have a feeling the same will happen with my diet. 

BTW the diet I am on is a Neutropenic Diet (http://www.upmc.com/patients-visitors/education/cancer/Pages/neutropenic-diet.aspx).  Many things on the list is easy for me to deal with like no fast food, no sushi, no yogurt, I'm not a big nut person, etc.  The no fresh fruits/vegetables is just the strangest part of it. 

I just see June as being a good month and hope things will be changing for the better.

Thanks,
Kenneth
05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Online JimDublin

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Re: Quarterly Blood Work
« Reply #42 on: March 25, 2018, 08:23:53 pm »
Read it and sounds to me like taking it to the extreme for a touch of aids in 2018

Anyhow wish you well with it, hope for you it ends soon. my diet advice was indeed avoid undercooked meat and eggs, at the time but the rest as normal.

Take care

Jim
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Offline Tonny2

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Re: Quarterly Blood Work
« Reply #43 on: March 25, 2018, 08:45:11 pm »


        ojo      hello again...i guess, do what your doctor say to you...hopefully, sooner rather than later, you will be able to enjoy fruits and veggies, the right way,,,wishing you the best and please, keep us posted...hugs                                                ojo

Offline bocker3

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Re: Quarterly Blood Work
« Reply #44 on: March 25, 2018, 10:26:16 pm »
I do wish you a speedy lift in CD4's. 

It does appear that he is being way overly cautious.  Even your diet (if he recommended it) is based on having neutropenia -- not sure how your absolute neutrophil count is, but HIV impacts lymphocytes, not neutrophils.  Lymphs are not the only part of our immune systems -- which is why there are folks who have survived for long periods of time with virtually no CD4's.

At any rate, if you are comfortable with your doctor, that is what is important.  I am too far removed to offer any advice on that.

Hugs,
Mike

Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2015 969/28% <20

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Re: Quarterly Blood Work
« Reply #45 on: March 31, 2018, 04:33:46 pm »
Hi All,

Thank you for your replies lately and you got me thinking and worried that my ID specialist isn't the best for me. 

I have setup an appointment with my doctor (well my PA is out so seeing the actual doctor) Monday morning at 7:30AM.  I have some questions about the current Rx's my PA has me on and also want to get a referral to the Wexner Campus at The Ohio State University Medical Center.  To start, it's just to see if I am getting the best care and very well might be a time to change my ID doctor. 

Monday should be an interesting day.

Thanks,
Kenneth
05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Online kentfrat1783

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Re: Quarterly Blood Work
« Reply #46 on: April 03, 2018, 07:35:22 pm »
Hi,

I had a good appointment yesterday.  My doctor has referred me to a doctor in Columbus, OH and they called me today about clarifying questions and will be calling back about the appointment soon. 

The nurse that I normally deal with when I get checked in was shocked I was still on some of my antibiotics and other issues I'm still having.  She is also the one that put me on the oxygen back in May so she remembers how bad I was and wants me to be doing better.

I'm looking forward to the followup appointment in Columbus and hopefully I will get some good answers or at least an answer that things are doing as expected.  Depending on how the appointment goes I may have to hit up the Apple store to get a present for myself (already have the iPhone 7 Plus so some nice earbuds would be nice).

Just wanted to keep you updated.

Kenneth
05/08/2018 - CD4 106 (11%)  VL - Still Processing
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Offline Tonny2

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Re: Quarterly Blood Work
« Reply #47 on: April 03, 2018, 10:10:26 pm »

       ojo       hello there, well, i'm glad you are going to get a second opinion...i used to see an id doctor in akron general, now, my id doctor is at the cleveland clinic.

i recommend you to make a list, beside the one for the apple store, with all the questions you may have to ask the new id doctor...like i mentioned before to you, i think that your id doctor, is exaggerating about how to deal with your situation, as i said before, i lived with aids for five years and my doctor, the one in akron, never told me to cook my veggies or fruits...wishing you the best, i wish i had the brains to know have to use a  cell phine, let alone an iphone...hugs                                              ojo

 


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