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Author Topic: The more I know, the less I know...  (Read 1402 times)

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Offline Maestro

  • Member
  • Posts: 225
The more I know, the less I know...
« on: February 14, 2007, 09:03:48 PM »
Let me start by saying I have learned SO much about HIV from this site, so I thank everyone for that.  However, a few themes keep popping up with my Uncle and I am utterly confused.  My Uncle just went to see his ID and the doc looks at his numbers and says you are doing great!  GREAT!  His cd4 is 140 and his % is 11-12.  This is great?

I don't expect the doc to say it is horrible, but come on.  How about the doc sitting him down and giving him some tips for healthy living?  Shouldn't he be exercising, watching his diet getting plenty of sleep?!  I mean these are things my doctor says when he sees me and I'm not in his condition.

My general feeling is this:  Every doc he sees starts by saying something like "I cannot believe you are still alive!".  And then, the subsequent visits finish with "You're doing great".  So are the docs just thankful he is still alive and aren't sure why? 

Or, am I completly off base?  Maybe he is great?!  Not from what I see, but then again I don't have an MD.

Thanks as always,
Steve 

Offline Ihavehope

  • Member
  • Posts: 1,366
  • Yes, I'm a cry baby, AND WHAT?
Re: The more I know, the less I know...
« Reply #1 on: February 14, 2007, 09:10:44 PM »
Hi Maestro

I think your doctor is trying to be supportive and optimistic. Normally 140 would not be considered a "great" number but I don't know how your uncle's history. It sure is alot better than having 11 or 70 CD4 cells. When my doctor told me I was 200 and resistant to Nukes she still told me that I am doing well and with meds I will be doing better. I felt like shaking her but I knew she was just trying to be as supportive as she could. I don't like to be scared but I also don't like it when they try to sugarcoat things. So I understand your concern, and if your uncle doesn't feel like this doctor is doing the best for him then switch.

Al
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline Robert

  • Member
  • Posts: 2,649
Re: The more I know, the less I know...
« Reply #2 on: February 14, 2007, 09:24:34 PM »
Hi Steve.

As I recall, you're on one coast and your uncle is on the other.  So you're not going to the Dr with him, are you?  Maybe your Uncle is trying to sugar coat what the tests show.  We know those numbers aren't great, but maybe he just doesn't want you to worry so he tells you something else.  Maybe he's thinking you aren't all that informed with HIV/AIDS.  Maybe he's hoping that you wouldn't bother to call the Dr yourself and talk to him about the results.  Maybe, just maybe, he's hoping you wouldn't show much concern.

If that's the case, boy is he wrong.  He's lucky he's got a nephew who loves him like you.

robert
« Last Edit: February 14, 2007, 09:26:43 PM by Robert »
..........

Offline Tucsonwoody

  • Member
  • Posts: 396
Re: The more I know, the less I know...
« Reply #3 on: February 14, 2007, 09:45:16 PM »
I can't speak for all doctors, but mine has almost always ended a monthly checkup with similar words from her, like you're doing well etc.  To me that doesn't mean I shouldn't have major concerns based on my numbers, it only means that the trend is looking better and compared with where I was, in her opinion I am doing great since I am still alive.  :P

I also wonder if a doctor who spends hours and hours dealing with patients who aren't doing well has a need to take advantage of any glimmer of good news to help them come back the next day and keep trying to help us. Kinda keeping up their morale while trying to boost our morale as well.

« Last Edit: February 15, 2007, 04:49:06 PM by Tucsonwoody »
And I wished for guidance, and I wished for peace
I could see the lightning; somewhere in the east
And I wished for affection, and I wished for calm
As I lay there - Nervous in the light of dawn

Offline sdcabincrew74

  • Member
  • Posts: 540
    • My Manhunt account
Re: The more I know, the less I know...
« Reply #4 on: February 14, 2007, 10:33:01 PM »
HA my doctor does not even want to see me anymore now that I stabilized (just once every 4 months).  However, he did tell me once I was getting stronger and was almost back to normal that he was worried that he would lose me in the beginning.  That was kind of scary but I appreciated the honesty.  18 months ago I could get same day appointments for anything in the world, now it is back to the same old, same old, unless I am on a stretcher I can wait a few days.....
The difference between an overnight and a layover is luck!

Offline allanq

  • Member
  • Posts: 691
  • still life with pills
Re: The more I know, the less I know...
« Reply #5 on: February 14, 2007, 11:19:36 PM »
Steve,

I think you're putting too much emphasis on the numbers. Your uncle's numbers are about the same as mine, and I've been feeling pretty good. I've had HIV for almost 22 years, and I've gone through some difficult times. When I compare how I feel now with how I was feeling 10 years ago, I think I'm doing great,  even with t-cells at 180 and a percentage of 10%.

There are plenty of people with great numbers who still suffer from debilitating conditions such as fatigue, diarrhea, and neuropathy. It's important to monitor the numbers, but you also have to look at how a person is functioning. How does your uncle feel? Is he still working? Does he seem to be happy?

Many people have preconceptions about what the numbers should be. They feel that you should have at least 600 t-cells at 35%, and if you tell them that you have 180 at 10% they draw dire conclusions about your health that are totally unwarranted.

Allan
Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra (no longer taking this)
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

Offline Maestro

  • Member
  • Posts: 225
Re: The more I know, the less I know...
« Reply #6 on: February 15, 2007, 11:05:04 AM »
Steve,

It's important to monitor the numbers, but you also have to look at how a person is functioning. How does your uncle feel? Is he still working? Does he seem to be happy?

Allan

Lousy, No, and Not at all.  That's just it.  It takes one look at him to know he is not doing great.  One look to know things could go bad real quick.

I think like this:  I teach High School Science.  If a kid has an F in my class, I tell him he is doing lousy.  Then we talk about ways to improve his grade.  I put the onus on him and I provide him with the tools/info he needs.  I don't get why a doc wouldn't do something similar.  I think the doc should say something like these are low #'s.  Let's make sure we do everything we can to keep you healthy.  And here is x, y, and z to get you started.  Unless, as I pointed out, I am wrong to be concerned with those #'s.  I hate to focus too much on the #'s, but at some point they must become meaningful.

Steve

Offline poet

  • Member
  • Posts: 934
  • Poet living and working in Central Maine
Re: The more I know, the less I know...
« Reply #7 on: February 15, 2007, 11:29:24 AM »
I would suspect that hospice doctors and staff members who are dealing with the dying would still say that someone is doing 'great.'  Why?  Because they have two perspectives.  The first is the reality, these are terminal patients.  The second is that, looking the other way, they are awake, smiling, eating and in no pain.  I am definitely not saying this in reference to your uncle's condition or situation, that it's terminal.  What I am trying to get across is that, yes, given the actual numbers but thinking about how he could be and has been, isn't he doing great?  Now as for why your uncle's doctor hasn't created a list of must do's for better health, that's a comment on his doctor perhaps.  If your uncle is happy with him, that's a choice.  Best, Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline Christine

  • Member
  • Posts: 1,069
Re: The more I know, the less I know...
« Reply #8 on: February 15, 2007, 01:44:00 PM »
M,
The numbers are important to a point. They indicate trends, they are used as a guideline for meds, they show the need to be very vigilant in one's health if the cd 4's are very low. But, health is more than numbers. It is a physical, mental, social, and spiritual level of well being.

At one point I had a cd4 count of 5. I was working full time, worked out, had an active social life, and did not have a single OI. I didn't know why, the doctor's didn't know why.

Now, I have a cd4 count of 12, and basically feel like crap most days, and I am happy if I wake up alive and without any OI's.

Personally, I would go by how your Uncle functions on a daily basis, more than the actual numbers.

And yes, the doctor should ask/ make sure he understands the importance of focusing on a healthy lifestyle. But, the doctor may be doing that, and your Uncle may be telling the doctor he is living a healthy lifestyle.

You are in a really difficult position being the care giver of a person who does not seem to want to become healthy, or is just happy with the way things are. My family went through something similar with my grandmother. It can be very frustrating.

From the doctor's perspective, compared to how your Uncle has been the past few months, he is doing better. My guess is that the doctor is trying to inspire and encourage your Uncle to keep moving forward, keep up the improvement.

Keep being there for your Uncle.

Also, I wanted to tell you that I have learned a lot from your perspective as the care giver. It has helped me understand and appreciate what my family goes through.

Thanks,
Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

 


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