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Author Topic: the red and green lines are going the wrong way  (Read 1784 times)

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Offline leatherman

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the red and green lines are going the wrong way
« on: October 24, 2009, 01:11:40 AM »
Thursday I finally got to meet my new doctor (I moved from Ohio to SC almost 2 months ago) - and so far, I like him. Doctor Charles seemed to be about the same age as my last doctor, Dr. Fiorentino, and just as pleasant. We chatted about the meds I've been through and my general history with HIV. That's quite a bit when you consider all of the consequences I've had from being positive - the pneumonias, being in the hospital, all the meds (and how I won't take anything with the mind-altering Sustiva in it), the barfing, and losing both Randy and Jim. Just as in the clinic intake interviews I went through a few weeks ago, there's a lot to talk about having had this disease affect my life for nearly 20 years. The good thing is at this point of my relationship with this doctor, we're just meeting and I'm doing pretty good, so we got off onto a good foot.

There was a minor troubling issue though - my lab results. I'm going to have to fuss at the nurse the next time. Her promise of good results didn't pan out. Though it's not a big blip, my viral load is no longer undetectable but barely inched up to a low 120. More troubling to me, though the doctor wasn't as bothered because it was above the "magical" trouble line of 200, my t-cells dropped by a large amount to only 209 (from the previous 275 and 305). Looking back at the appointment, I'm really kind of saddened by both those numbers. Though realistically neither one is a drastic change or (in my case) a horrible change, neither change is a good change as both numbers moved the wrong way.

I haven't had a blip in my viral load for some time. Matter of fact, looking at my numbers I see that  this ends the streak (that I've been in the undetectable range) for nearly a year and a half - going back to when Jim passed away! I was tested about a week after Jim died and two weeks before I held his memorial, and I've been undetectable every test from then to now. It was only about five years ago in May 2004 that I finally reached undetectable for the first time after being HIV positive for seventeen long years. Since then, it just seemed that I was unable to keep that damned virus totally at bay. Every few months, I'd get blips in that count, until May 2008, and I've held steady at undetectable - until now.

I can can't say that I'm all that happy with my t-cell count either. The last time it was this close to 200 (except for the one low count from that same test when Jim passed away and I went undetectable) was clear back in June 2006. So that's basically a three and a half year trend (of t-cells around 255) that's gone now. I quit taking Bactrim, an antibiotic which help prevents PCP pneumonia, because I had held so well above 200 for so long. I don't know that I'll have to start taking that med again; and the doctor didn't even bring it up; but it's a reason I'll be very interested in the results of my next blood work.


Looking at this graph, it's easy to tell when my "bad years" were by the way the red and green lines so frequently crossed one another as my viral load went up and my t-cells went down. It's also easy to tell when I committed to Jim, had better meds and stayed on regimen because the lines diverged and stayed apart like they should be doing.


But looking closer at this shorter time-span chart, it's a little troublesome to see that red and green line coming closer together again. There is one mitigating note to this news - the lines are closer to crossing at the bottom of the chart. Though I'd rather not be running low on T-cells as we enter the flu season (thank goodness, I did get that shot!) and H1N1 is floating about, at least I'm not having to contend with a skyrocketing HIV viral load with this broken down immune system.

Since my next appointment for blood work isn't until near the end of January, I'm going to make it on my calendar to "fuss" at the nurse and ask for a refund - or better results this next time!

While I was at the Clinic, I checked in with my case manager to see if she had found out any answers to my other issues. I still haven't received a "termination notice" from Ohio, so no food stamps yet, and no medical card. But Ohio may be finally terminating me (WooHoo!), as SocSec sent me note that OH isn't paying my medicare premium anymore, so that must mean things are moving along. However it also means that my disability check will be dropping by nearly $100 as I have pay medicare the premium now. OUCH! I just keep getting poorer and poorer.

Thankfully the case manager had some good news for me. With only 9 days left of meds, I'll finally be getting some this coming Friday. WooHoo! I'm so poor now that I qualify for all sorts of temporary help. (WooHoo, I guess LOL) Thank goodness I planned ahead though and stockpiled some meds or I bet my numbers would be even worse by now since I haven't been able to get any more meds for the last two months. My case manager also had another stack of forms for me that, once filled out and turned in, "should" get SC to cover that premium, a medical card and even get my med co-pays covered. WooHoo! I'll still have to wait for the notice from Ohio to get the food stamp issue cleared up; but since I took a trip back up to Ohio two weeks ago to purchase $355 worth of groceries with my Sept and Oct food stamp benefits from OH, I should be ok until that gets straightened out. I just keep plugging along and pushing things and it'll all get worked out someday.

Oh, I did have one other interesting bit of news that appealed to my "evil side". Reading the court docket online, I see that the magistrate issued a writ of restitution against my stupid ex-roommate. Alhough he caused all this rigamarole that ended up making us lose the house, and causing me move back down South, the jerk actually continued living in our old place two months past the date the lease was up. So the rental agency filed to evict him. Now he's liable for over $1500 bucks for all the trouble and aggravation that he caused. HA HA Serves the jerk right.

Though, I really can't claim anymore that it was all that much "trouble and aggravation". Well. I guess it really was at that time; but the unintended consequence of the ex-roommate's stupid, hateful, evil actions was that I finally moved back home after all these years. The boyz and I are ever so happy in our new home - even if I'm still having issues with getting all those social services lined up.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline rondrond

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  • Posts: 1,712
Re: the red and green lines are going the wrong way
« Reply #1 on: October 24, 2009, 01:34:25 AM »
Hi Mikie,

Sorry things just never go like we plan them...but they do get done, eventually. You have proven yourself to be very resourceful.

I just have to say about your grocery trip to Ohio... my friends used to really give me grief for traveling to the other side of town to buy something on sale: their argument: the gas I used negated the sale price: but I did used to wind up in the strangest places, far from home: shopping. Come to think of it, it could have been called cruising.  ;D

Glad you like your new doctor. That's a plus.

Ronnie
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline BT65

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Re: the red and green lines are going the wrong way
« Reply #2 on: October 24, 2009, 07:03:46 AM »
Mikie, sorry to hear about the recent lab results.  I'm wondering if they're like this because of the stress of the move?  May be something to ask the doctor, should you want to.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: the red and green lines are going the wrong way
« Reply #3 on: October 24, 2009, 07:17:26 AM »
Hi Mike,

Don't sweat the VL blip - it's more likely to do with lab error or test error than it is to do with you and your virus. I've said it here before and I'll say it again - the VL tests are not used as diagnostic tests because they can and often do come back with what can be called "false positive" results. In other words, an hiv negative person taking a VL test can have a result just like the one you did - and they don't even HAVE hiv. These false positive results are typically low numbers, just like yours.

I wouldn't sweat the lowered CD4 either. Come on Mikie, give yourself a break! You've just gone through an awful lot and you weren't yet settled into your new home when you had your labs taken. It's not surprising you had a bit of a dip. Now that you're more settled in, chances are excellent that they're already climbing back up. Hang in there!

I'm glad to hear you've got your meds sorted out. Hopefully everything else will fall into place as well. Fingers crossed they don't keep you waiting much longer, but we both know the wheels of bureaucracy grind slowly.

Hehehehe... I have to admit I'm glad to hear your ex-roomy got his just desserts. ;D

Ann
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline leatherman

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Re: the red and green lines are going the wrong way
« Reply #4 on: October 24, 2009, 10:56:19 AM »
Now that you're more settled in, chances are excellent that they're already climbing back up. Hang in there!
Thanks for the pep talk! ;D I guess I got bit in the ass by my own doom-n-gloom. Ouch! ::) I really should know that I'm doing alright since that flu shot they gave me didn't kill me - or give me the flu.  :D ROFL

You know I've been just "so sure" I'd have falling numbers (well, I guess that would be SOME falling and SOME rising LOL) throughout the whole time of Jim's illness, death and the past year going through the aftermath while changing homes - not to mention changing homes so drastically just a year after that by changing states. But I kept having all those good numbers. Isn't that so sad?  :D I've had bad numbers for so many years, that quite frankly the good numbers scare me  ::) I'm just pitiful  :D :D

the VL blip really isn't that big a deal though, for sure. Why I had blips up to 3k and 5k just a couple yrs ago and wasn't too troubled.  ;) But after all these years I was finally consistently pushing up against 300 for the tcells, so I'm just a little sad that they took such a hit. Everyone else cries when theirs only go back up to 5 or 600.  :D But I just keep going along with barely over 200 and this constantly blipping virus - while at the same time actually getting healthier than I've been in the last 20 years. go figure  ::)

I don't have to go back for labs until January (so that shows how worried the doctor was  :D ) and I'll make sure to think happy thoughts that day so my cd4 count will be higher. ;)

Hehehehe... I have to admit I'm glad to hear your ex-roomy got his just desserts. ;D
:D
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Joe K

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Re: the red and green lines are going the wrong way
« Reply #5 on: October 24, 2009, 01:02:48 PM »
Hey Mike,

I had a long period where my CD4's were really low, but I felt fine and I was working with 200 t-cells for almost ten years.  Until 1999, my counts were very low and it took almost six years to get them above 350.  Even now they hover in the high 300's, but I'm not dead yet, so why should I let it get to me?  I've been following your recent events and what I think is, your current blips are a reflection of all the stress you have been under and you need some time to recover.  Often, when we are in the middle of madness, it is very hard to see any negative effects on our health, because it takes time for those changes to occur.  I think you are seeing those changes now and if you give it a couple of months, I bet your numbers will improve.

I say this because you sound much more relaxed in your posts.  It seems that you are really happy now and even with your problems getting new social services, your tone remains upbeat.  I say you forget the numbers until January and give your body some time to reflect the "new you".  My bet is you will see a nice increase to ring in the new year.

Offline leatherman

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Re: the red and green lines are going the wrong way
« Reply #6 on: October 24, 2009, 01:30:16 PM »
Often, when we are in the middle of madness, it is very hard to see any negative effects on our health, because it takes time for those changes to occur.  I think you are seeing those changes now and if you give it a couple of months, I bet your numbers will improve.
Everyone seems to bemoaning their low tcell counts today. LOL I was just in another thread writing about that. ;D

I think my problem is just some depression. I usually do pretty well fighting it off; but sometimes it's so subtle and it takes a toll on you without you even realizing it.

I really had come to grips with having a low count as they were barely out of the 100s for the first decade after I was diagnosed. However after being on the same regimen for nearly 7 years, I was just starting to stay consistently around the 275 mark. Bumping up to 305 and 311 just got my hopes up in the last couple of years. But as I just wrote in another thread, It's been nearly 12 yrs since I was last in the hospital, so it's not about how many tcells you have, it's about how well they work. ;)

I think too, retelling my stories a gazillion times to all these social workers, which constantly reminds me that both Randy and Jim are gone, has just been a downer. I've had to recount those times when I was pretty damned sick and alone, between those long-term relationships. I'd just hate to think that this tcell drop (along with a viral load that really has never stayed suppressed very long in 17 yrs) was a foreshadowing of being "half sick" and alone again. (Damn that Love :-* for giving me those happy years! :D ;D If it had only left me miserable I'd be happy now. ::)  :D  :D)

As I just told someone else though, I really am going to have to just quit thinking about it for a bit. I'm putting on my headphones and going outside in the warm Carolina sunshine to do some yardwork. That always makes me happier - plus how deadly ill can I be and how horrible is it if I can go tote around wheelbarrows of mulch as I get the shrubs ready for the winter? ROFL

Thanks for the words of encouragment though. You can never have too much of that support when you're trying to fend off depression. ;)

mikie
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

 


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