POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: Zicon13 on August 17, 2007, 12:13:39 am
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Excuse my English. My name is Jean-Pierre and I live in Montreal. I have been HIV/Aids for the past 20 years.
I had a doctor's appointment this morning. As he was fingering through my medical file, he started to give me an update on my T-cells and viral load of a recent blood test. I noticed that my system is responding positively to the new treatment. He was happier than I by those results. The matter of fact I gave him the neutral look. He then reminded what I told him once to stop bothering me with all these numbers, it does not mean a thing to me but only to the scientists and pharmaceutical company. And above that he mentioned that if I was on medication I would have been dead long ago. Know I was more surprised. He opened the door for a debate. I told him, if it wasn't for the medications I would probably look and feel better, would not have to live through strong side effects, drug resistency and cellular deprogramming. Then I added: What do you think doctor, is it better to die happy or die sad and with all the aches and pains from the medications? He was troubled by my question. Maybe because i have been a long term survivor I dared to answer as such. Why now do I feel guilty for saying such things?
In the past I was affected everytime I would get my results. It was like a rollercoaster ride. From then on I decided that these numbers were never going to have a hold on me. Learnt with time that it is not the quantity of years that you add to your life that is important but the quality of days you add to your life.
Please help me or slap me. Have I gone to far? Have I said too much? Do I need a reality check?
Thanks very much!
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Welcome Jean-Pierre,
I live just up the river from you in good old Ottawa.
No, you have not gone too far in speaking your mind with your doctor. I do it all the time, and I would dump any doctor that objected. Doctors are supposed to be our partners in caring for our health, right?
If you can't be honest and open with your doctor then who can you be with?
Daniel
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Hi Daniel from Ottawa,
Beautiful city. That 's where I going for my vacation next week. Thank you very much for the reassurance. I feel much better knowing that someone feels the same way.
Cheers!
JP
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I sure can sympathize with you. I switched doctors after a few years of meds because I was tired of the doc just shrugging off my complaints of side effects. (turns out he was quite a drunk anyway and pretty unhappy to have an office of sick gay guys sitting around in his office in the 90s) When the second doctor started to do the same thing, I really gave him "what for". I told him that if I was going to be puking EVERY day and feeling so dang sick, that I was just going to stop the meds and stop seeing him too. After I vented on him, we had a nice heart-to-heart chat. After that, although I had to go through the side effects of several more meds, he worked with me to finally get a regime that worked on the virus but didn't make me so sick from all the side effects.
On one hand, I wouldn't wish these side effects on anyone; but on the other hand, sometimes I wish the docs could experience at least a portion of the bad side effects so they could truly understand that being sick from the meds can be as bad (or worse!) than being sick from the HIV. I guess not having our experiences though lets the doctors stay objective enough to keep nagging about the adherence to the meds.
I would imagine too, that this is a problem more of us long-term Hivers have. Taking AZT in 96 was literally killing me faster than the disease. Now, the meds are getting better and the side effects aren't as bad. Some people have chosen to just quit the meds, and some have struggled through the effects to find the right combo. I agree with you though, it is about the quality of life, rather than just the quantity. You'll have to make your own choice to how much you'll "suffer" to fight this disease.
I wish you the best of luck and health!
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Z,
If that had been my doctor, I would have told him to bugger off, and that would have been our last appointment.
As for your disinterest in your lab numbers, I would suggest that you show some interest, if only so you can be an informed partner in your care and prevent an untimely downturn. An improved quality of life is an admirable target, but getting there by letting the virus win and allowing your immune system to become damaged possibly beyond repair is foolish.
Peace,
David
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Welcome Zicon,
I agree, no doctor should dismiss you as yours did. A good working relationship with your doctor is essential.
I also agree that quality does indeed outweigh quantity.
But David has a good point as well. Your doctor is only your partner in care, you are in charge of it and, as such, it is essential to know where you are and how you are doing.
Through that partnership, you can find a regimen that works for you yet doesn't destroy your quality of life.
By the way, I visited Montreal during AMG 06. It was a delightful city and I truly enjoyed myself there.
HUGS,
Mark
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Thanks again everyone. Your answers are helping alot. :-*
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Zicon13, as far as I'm concerned, it's her disease and I'm just harboring it for her. As soon as she can find another place for it, I'll be more than glad to give it up to her. ;)
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RapidRod, Thanks for the laugh :D . Thanks for the boost. I'll give my doctor your massage. JP
Zicon13, as far as I'm concerned, it's her disease and I'm just harboring it for her. As soon as she can find another place for it, I'll be more than glad to give it up to her. ;)
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I know playing the numbers can be aggravating, but I think it's something we should do, so we can adjust our lives accordingly.
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Some Docs do indeed look at it as their disease. You came to them sick, it's their job to make you better. It's what they do.
Occasionally we have to remind them that we're people as well as patients.