Author Topic: Welcome to Club Med (Read 10111 times)

otherplaces · « **on:** August 08, 2006, 02:43:57 am »

So I got the news from my doc today. My CD4's went from 430/29% to 316/27%, and he suggested it's time to start meds. We haven't gotten the VL yet. Really I can't say I'm surprized. I've been expecting this. Of course I had my fantasies that my CD4's would skyrocket, but I also knew this was a pipe dream.

I must say I feel extremely fortunate. Fate intervened on my behalf. By coincidence I had already planned to spend the day with my friend in town from NY. She knew I was waiting on the news. We had just arrived at a large conservatory in Chicago when I got the news. So we sat on some benches outside on a very nice day and she hugged me. Her presence grounded me. All I could think was of all the extremely hard times I've been through and had to go through alone. All the lonely painful days I've had. I just felt blessed that this news came with someone there to comfort me. I will have eternal love for her presence on this day.

So we went and looked at the expansive fern room and then walked a meditation path (hard to explain). We had dinner and probably drank a bit more than we should. It seems incredible to say, but it was a beautiful day.

I see my doc next week to start the med process. I assume a genotype test comes first....and on we go.

love,
brian

Matty the Damned · « **Reply #1 on:** August 08, 2006, 03:01:58 am »

Hey Brian,

You know a percentage of 27 isn't TOO bad, but if you're ready to start medications and your doctor thinks so, then it's time.

I'm sure you'll do fine.

Fondly,

MtD
/edited because I made a typo worthy of a Moderator/

otherplaces · « **Reply #2 on:** August 08, 2006, 03:56:01 am »

Thanks Matty,

Yes, I know. I don't have a feeling of emminent danger, but while 27% isn't so bad 316 isn't so good. I imagine I could hold out for awhile if I really wanted to, but who's kidding who? It's time for the Brian vs. HIV smackdown. I wouldn't place your bets on HIV.

brian

Jeffreyj · « **Reply #3 on:** August 08, 2006, 04:14:06 am »

It is FAR from the end of the world. It is just a new world you are about to enter. Smackedown seems a bit harsh...Anyway, it's more like a rollercoaster ride. Just fasten your seatbelt and enjoy the ride!!!

Andy Velez · « **Reply #4 on:** August 08, 2006, 07:27:44 am »

....and as you know but I will just remind you, as you go through the process you can ask, talk and explore here as much as you need to.

Good luck with this new chapter on the journey, Brian. That day with your friend sounds like it was just the thing.

emeraldize · « **Reply #5 on:** August 08, 2006, 07:45:34 am »

Good Morning and Good Luck to you Brian.

ChicagoMike · « **Reply #6 on:** August 08, 2006, 08:17:49 am »

Brian,

I recently started medications and will honestly say that it was a lot easier than I thought the process would be. Depending on your doctors advice, hopefully you will be able to take the new Atripla one pill a day medication which will make it very easy to adhere to. Just take before you go to bed.

Keeping you in my thougths, and shoot me an email if you would like to talk!

c69 · « **Reply #7 on:** August 08, 2006, 08:38:54 am »

You will do fine! Try not to worry too much.

Greetings from Europe.

C69

Beatz4me · « **Reply #8 on:** August 08, 2006, 09:54:05 am »

Sorry to hear this Brian...from someone who will need to start too, I am very curious to hear how you're doing...Hope to hear from you soon.

MSPspud · « **Reply #9 on:** August 08, 2006, 09:55:16 am »

Hi Brian -

I think you'll be pleasantly surprised once you start meds. While I piss and moan at times, for the most part I do feel better then before with more energy and great counts. I started with similar numbers to yours about this time last year and today I have a count over 800 and a percentage over 40. When you start at the right time, the meds really do wonders and have less side-effects then when beaten down and worn.

Best of luck and let us know how it goes.

Moffie65 · « **Reply #10 on:** August 08, 2006, 10:13:44 am »

............................and six months from now, you will be saying, "why was I so worried". Not because you didn't have any problem adjusting to the meds, or they don't cause you undue stress, or send you to the bathroom too often; but because you will finally realize that the alternative really sucks big time.

You will do fine.

IN Love and Support.

bobik · « **Reply #11 on:** August 08, 2006, 11:20:38 am »

Hi Brian,

so great that your friend was there with you. When the news was new for me, in the first year, often friends offered to come with me to the hospital and it just felt so good not to be alone.

I love that old sentimental song by James Taylor: You''ve got a friend

Hug

Coen

Teresa · « **Reply #12 on:** August 08, 2006, 11:29:16 am »

Brian,

My hubby started meds in may right after he was first diagnosed.

He has been doing great on them. None of the really bad side effects. Hes had a couple of bouts of diarrhea and for awhile he was having night sweats but no much anymore.

Hes going to start the Atripla when he finishes the meds he has now. Hope he does as good on them.

Good luck on starting your meds.

Hugs
Teresa

otherplaces · « **Reply #13 on:** August 08, 2006, 02:52:30 pm »

Thanks everyone for your support and thoughtful comments. They are greatly appreciated.

I really thought I'd be more upset having to start meds one year after infection, but I just feel ready to move forward. And I really won't miss being in such a strange limbo in regards to my health.

much love,
brian

David_CA · « **Reply #14 on:** August 08, 2006, 04:33:23 pm »

Brian,

I'm not on meds yet, but my Dr. mentioned it at my last appointment. I'm waiting for the results from my tests a couple of weeks ago. I'm also concerned about starting meds. On the other hand, I think that knowing that I'm taking steps towards keeping healthy and not being so paranoid about my numbers (or health) dropping will help reduce some of this anxiety I've been experiencing. Good luck with them, although those more knowledgeable have given their experienced views that you'll do fine. Keep us informed and take care.

David

wellington · « **Reply #15 on:** August 08, 2006, 04:40:27 pm »

My first mouthful of pills was a milestone back in March, 2006, a month after my diagnosis. The first week - thank you Sustiva - was a bit trippy. Now, just five months in, my CD4 continues to rise, having started at below 50 and now reaching 200+, and VL is decreasing from over 250,000 to undetectable. Frankly, I wish I had been diagnosed sooner because I feel better now than I have for at least a year and some months. I knew I was ill but that Egyptian river caught me too, but has power no longer

ndrew · « **Reply #16 on:** August 08, 2006, 04:45:35 pm »

Hi Brian,

I was "gifted" in March of '06. My last labs in early June were CD4 292 and VL 11.5K... I was initially afraid of trading one biological (virus) toxin for pharmaceutical toxins. I also felt going on meds would be one step closer to a journey I do not want to take (denial). But I have learned a lot in the forums and I have decided to start meds soon. I have labs in early Sept. and I figured I would have a resistance test done then and talk to my doctor about starting treatment. I am expecting the CD4 to go down, as I have had a TON of stress and been sick with a sinus infection.

The comments and posts have made me feel positive about starting meds and being active and I imagine a psychological relief in knowing I am taking on my health issues. I even wonder if it was a mistake to wait this long to start meds (over 2 years)...

I understand the pain, loneliness and tough times, but DAMN if we aren't strong, huh? I hope you share your experience as I will mine. I know now that starting treatment is the right thing for me now. I wish you the best and look forward to hearing more...

Kindest,
andrew

MoltenStorm · « **Reply #17 on:** August 08, 2006, 04:53:54 pm »

*big hug*

I'm so glad you had someone there to lean on. You'll be ok, Brian. We'll be starting meds together!

*another big warm hug*

Lou-ah-vull · « **Reply #18 on:** August 08, 2006, 05:00:20 pm »

I started my meds in mid-May and it was a big step. I found that reading the posts here and hearing everyone's real world experience (rather than the doctor or the drug company's platitudes) really gave me confidence. My side effects have been minimal and my numbers are already improving. I would advise you to read as much as you can about the first line therapies. It will easier to talk with your doctor when you know the names and categories of things.

Oh yes, and keep in touch here. These forums are the equivalent of adhering to your therapy!

Good luck and best wishes!

Gary

Eldon · « **Reply #19 on:** August 08, 2006, 11:15:43 pm »

Hello Brian, it is Eldon. I wanted to wish you good luck in starting your meds. It is a good thing. Just make sure that you take them as prescribed by your doctor. {{{HUGS}}}.

It is always good to have someone to lean on.

Life · « **Reply #20 on:** August 08, 2006, 11:23:10 pm »

I am an idiot.. I thought this was about a cruise... Brian, no big whoop... I am into it by a "moffie six months" and I am saying "what the hell was the deal anyway"... Stay on the bright side of life..

Love

otherplaces · « **Reply #21 on:** August 09, 2006, 12:27:00 am »

Everyone,

Thanks again for your support and comments. It is all very helpful.

I'm fine. I'm really hoping I can just turn a big corner all at once. I had 1/4 of 1 cigarette today. That's a pretty good improvement for me. I feel ready for change, ready to take control.

much love,
brian

wellington · « **Reply #22 on:** August 09, 2006, 03:16:33 pm »

Pardon my saying so, but it sounds from your postings that you are very much in control already

Turn that corner, hard, dude. There is a very significant chance that it will be even more gratifying than 1/4 cigarette!

allopathicholistic · « **Reply #23 on:** August 09, 2006, 03:23:50 pm »

Quote from: otherplaces on August 08, 2006, 02:43:57 am

I just felt blessed that this news came with someone there to comfort me. I will have eternal love for her presence on this day.

Beautiful words! My money's on Brian, who's gonna kick HIV's ass

Beatz4me · « **Reply #24 on:** August 29, 2006, 02:48:22 pm »

So how are you doing Brian

otherplaces · « **Reply #25 on:** August 29, 2006, 09:49:10 pm »

Thanks for asking:)

Well, so far I'm fine. Swelling in my lymph nodes is less and less. All side effects have been really quite minor. So minor that they're hardly worth mentioning. The only thing is that my left leg feels a little weird. Pretty much exactly like it felt during my primary infection. Slightly numb, moves around. Nothing painful or in the way, just noticeable. Even more odd was that yesterday there was some numbness, and today it felt like it was more in my knee and ankle...not numbness but like I'd been standing too long. Just seems strange. I know the sustiva can do stuff with the central nervous system. I'm, of course, hoping it clears up and doesn't go down the road to real PN. That's the only thing of note.

It's also been raining two days straight which has gotten me down a little and screwed up my working out and running. And this is when the numbness presented itself more. I'm hoping that it clears up tomorrow and I can go for a nice run and feel better.

Overall, I'd say it's going well.

brian

Eldon · « **Reply #26 on:** August 29, 2006, 11:09:13 pm »

Hello Brian,

It is good to hear that you are doing well on your medical regime. Also, you may want to keep an eye out for that numbness in your leg. Other than that, eat a proper diet, drink plenty of fluids, get your exercise, and get your proper rest.

Have the BEST Day.

blondbeauty · « **Reply #27 on:** August 30, 2006, 09:44:16 am »

Congratulations on taking the wise decision to start. We have almost started at the same time. Lets see how it goes!
Good Luck!
Hugs!

lostboy · « **Reply #28 on:** August 30, 2006, 08:09:25 pm »

Brian,

Good luck with the meds. My CD4's are only 67 and I'm hestiant to start treatment, but it looks like it's time. You here so many horror stories abou the meds, but this thread has helped me get some perspective.

Cheers,

Lost

otherplaces · « **Reply #29 on:** August 30, 2006, 10:19:59 pm »

Hello Lost,

Starting treatment is definitely a personal decision to make. Nonetheless, I'd dare say the low CD4 horror stories tend to quite out do the meds horror stories. IMHO.

Anyway, my leg feels tons better today. I could hardly feel anything abnormal. So that was nice.

Thanks for all your responses,
brian

Beatz4me · « **Reply #30 on:** September 07, 2006, 11:52:52 am »

Great to hear it all worked out for you Brian

Michael

otherplaces · « **Reply #31 on:** September 08, 2006, 11:23:55 pm »

Thanks Michael,

The leg issue seems completely resolved. I haven't felt any numbness in at least a week. I see my doc soon to make sure the meds are working. Just want to get this all behind me and ride the wave for awhile.

brian

poobear · « **Reply #32 on:** September 09, 2006, 12:50:54 am »

Hey Brian nice to hear you are doing well with your medication. Just saw your post today and want to welcome you to a new journey. The best advice I can give you is take your meds same time every day without missing a dose. Having been on meds for about 10 years its a whole new way of living. Just remember you come first before anything. For example if you go out for the evening or breakfast or whatever make sure you have your meds with you in case your not home in time. It is very important t adhere to a strict regimen, this is so you do not become resitant to a medicine quicker than you have to. I personally have to set my alarm for the one I have to take on an empty stomach. I hope I am making sense to you. I'm not very good with writing. I am glad you are feeling better and hope your journey is a good one with not to many bumps in the road. Happy to hear your friend was there with you at the right time. Great BIG HUG to you. Rachel

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Author Topic: Welcome to Club Med (Read 10111 times)

ChicagoMike