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Author Topic: Scared, please help  (Read 3772 times)

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Offline Patrick

  • Member
  • Posts: 86
  • Where the determination is, the way can be found.
Scared, please help
« on: November 17, 2007, 07:26:12 PM »
Hi everyone, I was just diagnosed with HIV a couple of days ago.  I am so scared.  I don't want to bring everyone down but I am so scared of dying from this, that the disease will mutuate and I'll run out of medications to take, that I am going to generally suffer and not live a somewhat normal life. 

I just started treatment with Truvada and Kaletra.  I'm feeling nauseated, have diarreah, and I'm terribly tired.  Add all this to my overwhelming panic and nervousness right now and I'm a wreck.  Some words of advice and wisdom and comfort would be appreciated.

Thank you all.
Seroconversion - late October 07
11/14/07 - CD4 190   VL >750,000
11/14/07 - Started Truvada & Kaletra
12/5/07 - CD4 851     VL 710
2/19/08 - CD4 604     VL Undetectable
5/8/08 -   CD4 829     VL Undetectable
8/12/08 - CD4 915     VL 80 (blip)
11/11/08 - CD4 967    VL Undetectable

Offline xyahka

  • Member
  • Posts: 778
  • Dance together!! aha!! aha!! I like it!!
Re: Scared, please help
« Reply #1 on: November 17, 2007, 09:09:30 PM »
Hi, well.. 8 months after diagnosis... i can tell you this.. "life goes on...".

We all have fear when diagnosed... but humans were created to face and addapt to the hardest situation and we all have the inner capability to survive. It is awake inside you and despite hard times might come in the future... despite whatever can happen, you will see you will find the strength to face it all and overcome it.

Just calm down, educate yourself and make plans for the future... there are lot of things to do yet.

Have a great weekend,

Juan Carlos
13/03/07 1er diagnóstico /Peso: 79kg
19/04/07 CD4: 494 /CViral: ?? /Peso: 80kg
19/07/07 CD4: 659 /CViral: ?? /Peso: 79.5kg
06/03/08 CD4: 573 (después de meses muy deprimido) /CViral: ?? /Peso: 79kg
17/09/08 CD4: ?? /CViral: ?? /Peso: 84Kg
06/02/09 CD4: ?? /CViral: ?? /Peso: 85Kg /HCV: Neg /HBV: Neg.
07/03/09 CD4: ?? /CViral: ?? /Peso: 87Kg / Gym 3días/semana y Natación 2días/semana.
12/05/09 CD4: 470 /Cviral: ?? /Peso: 87Kg.
08/07/09 CD4: ? /CViral: ? /Peso: 77Kg.
09/12/09 CD4: 510 /CViral: ? /Peso: 78kg. No medicinas aún
10/01/10 CD4: ? /CViral: ? /Peso: 76Kg.
15/05/10 CD4: 320 /CViral: ? /Peso: 76Kg.
01/02/11 CD4: 291 /CViral: ? /Peso: 78kg.
05/05/11 CD4: 366 /CViral: ? /Peso: 78kg.
27/07/11 CD4: 255 /CViral: 138000 /Peso: 78kg.

Disfrutando y aceptando una nueva vida...

Offline BirdBear718

  • Member
  • Posts: 105
Re: Scared, please help
« Reply #2 on: November 17, 2007, 10:15:51 PM »
Hello.  I am sorry you are scared.
You have support here, from the people who are on these forums.

A couple of pointers:
1.  Communicate with your ID doctor -- tell ID all symptoms, feelings -- be truthful.
2.  Do not be afraid to reach out for help.
3.  Regarding meds:  take them exactly as prescribed!  Make a chart if you need to.
     Set your watch or cell phone to make an alarm time for you to take the meds.
4.  Find something that brings you joy -- painting, writing, drawing, talking/gossiping on the phone, bike riding, and find joy.

Take it one day....or one hour....at a time. 

Your feelings are legit.  They are real.  They are yours.  It is okay to post in order to vent, when feeling sad, when feeling excited, to share news, whatever.  The people here care.

I agree with Juan, "there are a lot of things to do."   There really are. 

I will keep you in my  thoughts....

Offline dgr20002

  • Member
  • Posts: 288
Re: Scared, please help
« Reply #3 on: November 18, 2007, 12:05:25 AM »
Hi,

Being scared is normal right now. That brings on a lot of stress and add to that the meds and you have a lot of reasons to not feel well. Different meds have different side effects on different people. Some people have few side effects and others on the same drugs have many side effects. The important thing to do is discuss how you are feeling, and all the side effects with your doctor.  You two decided on trying this combination for a reason, but that does not mean that you can't change it to something else that may work better for you later on if you simply can not tolerate the meds you are on now.

There is plenty of good news too. You can be healthy and live a very long time and achieve all the things you dream of doing. You will need to do a few things to help yourself along the way though such as resting, eating well and exercising etc. It is important to adhere to your medication schedule too as they are now a part of your life. All the things you are feeling are normal and things will get better in time.

Keep us posted on how you are doing. Did you have blood drawn to get your viral load and CD4 count already?  When you get a baseline to see where you are with those tests you can see how you are progressing on your new drug regimen. Let us know.

Take care,

David

Offline Patrick

  • Member
  • Posts: 86
  • Where the determination is, the way can be found.
Re: Scared, please help
« Reply #4 on: November 18, 2007, 12:46:48 AM »
Thanks so much for all the support everyone.  I had my blood drawn to get my first reading on cd4 levels.  When the test came back positive, my virus count was over 750,000.  I was/is in the acute or initial stage of infection, as I also had an antibody test done a week before the actual virus test, and it came back negative.  So my infection is so new, my body wasn't producing measurable antibodies yet.

In any case I insisted that I start treatment right away and my doctor was ok with that.  I didn't know anything about hiv meds but he prescribed me the truvada/kaletra combo.  After the last few days of research it seems to be a good choice to me for a therapy.  I'm hoping by attacking this so early I can increase my odds for a long life.  I'm "only" 28 so I'm hoping for many good years ahead, but I am worried.

I'll let everyone know my cd4/viral loads as I continue to get tested.  Right now I don't have a whole lot of info.

Thanks again for all the support.
Seroconversion - late October 07
11/14/07 - CD4 190   VL >750,000
11/14/07 - Started Truvada & Kaletra
12/5/07 - CD4 851     VL 710
2/19/08 - CD4 604     VL Undetectable
5/8/08 -   CD4 829     VL Undetectable
8/12/08 - CD4 915     VL 80 (blip)
11/11/08 - CD4 967    VL Undetectable

Offline DanielMark

  • Member
  • Posts: 1,475
Re: Scared, please help
« Reply #5 on: November 18, 2007, 06:32:42 AM »
Hi everyone, I was just diagnosed with HIV a couple of days ago.  I am so scared.  I don't want to bring everyone down but I am so scared of dying from this, that the disease will mutuate and I'll run out of medications to take, that I am going to generally suffer and not live a somewhat normal life.

Hi Patrick,

Welcome to the message forums. And welcome to Club Kaletra. Kaletra is notorious for its "loosening" powers so don't worry that it's virus-related or anything like that. In my case it’s also good at creating gas (from both ends), which is always fun.

For someone just diagnosed a couple of days ago, what you are feeling is perfectly understandable. In time, if you stick to your med schedule and don’t abuse your body and mind too much with alcohol or other drugs, chances are good that you will live a good long time.

I remember the early days after my diagnosis in 1988 and how I felt at loose ends not knowing what to expect. The drugs are much better now than they were then, and although I only started mine five years ago, they seem to be working well so far. What tomorrow will bring I have no idea, but I try to not project too much into the future. This isn’t always easy since I’ve always had a rather wild imagination.

Try to take this one step at a time, Patrick. Things will be much more manageable that way.

(((HUG)))

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline komnaes

  • Member
  • Posts: 1,893
Re: Scared, please help
« Reply #6 on: November 18, 2007, 09:56:18 AM »
So here you have it Pat.. ;)

Daniel has been around a long long time, close to 20 years, Juan Carlos is 8 months, me over 2 months post diagnosis, and we're telling you the same thing - life will go on. Empower yourself with knowledge about your virus and meds. Find supports from family, friends and support groups, and you can always count on some cyber hugs and shoulders to lean on here.

The panic will go away and you will adjust to the side efforts, somehow, if not, go talk to your doctors and at this early stage there are other condoms to try.

Be strong my friend!

Shaun
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline next2u

  • Member
  • Posts: 1,762
Re: Scared, please help
« Reply #7 on: November 18, 2007, 12:09:17 PM »
hi patrick,

things do get better. it will not be a walk in the park, but it will definitely be worth it. the advice from all the others above rings true; the meds will have different side effects and if you take care of yourself your life will be well lived.

freaking out is normal, give your head time to wrap itself around this. find a support group if necessary. there are some good books out there on this too. as a newbie, i picked up hiv the first year and the guide to living with hiv infection. the first is a practical guide to dealing with hiv infection for newbies. it deals with first steps, giving yourself time to adjust, information on the virus and how it can affect your life, etc... the latter is more technical but it has a lot of great information. also, the lessons session on this site is spectacular, check it out if you haven't done so.

trust me, your life is far from over and you better take care of yourself, you still have a lot of fun (and not so fun) things to do. you've found a great community here and you are off to a good start.

midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5

Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 24,707
Re: Scared, please help
« Reply #8 on: November 23, 2007, 05:26:32 PM »
Hi Patrick,

I'm wondering how you're doing since your last note --physically and emotiionally.

I know it has hit you hard and scared you. But hopefully you are beginning to absorb the news and realize that life has changed but it is going to go on. It's very important that you establish a good working partnership with your doctor. That's a major part of staying well.

Read the lessons on this site if you haven't already done so. I think you'll find some helpful information here. You're always welcome to ask questions here as well as to discuss anything that's on your mind. Gradually you're going to learn everything you need to know to keep you healthy.

And welcome.

Cheers.
Andy Velez

Offline Patrick

  • Member
  • Posts: 86
  • Where the determination is, the way can be found.
Re: Scared, please help
« Reply #9 on: November 27, 2007, 10:12:31 AM »
Hi everyone, thanks for all your help and support.  I have read almost every post in some areas of this forum, trying to educate myself, and its been helpful.  Thank you all.  Well, after almost 2 weeks, I am still here and any short-term side effects from my medicine are wearing off.  My appetite has come back and I feel more like my normal self.  I attribute a lot of my improvement to a reduction in worrying/anxiety - I didn't realize how much that was making me physically hurt.  My doctor has prescribed Klonopin (i think that's how you spell it) and it has REALLY helped me get past the panic and get on with going about my daily life. 

I still have many worries of course.  Again, my docs found this in me while I was still sick from the initial seroconversion so its super early in my ride with HIV.  My CD4 count came back at 190 and my viral load was >750,000.  Both numbers were scary to me but my docs say that's absolutely normal during the seroconversion time and immediately afterwards.  They say that even if I was left untreated, that the cd4 would bounce back up quite a bit and the viral load would drop somewhat as my body started to naturally fight it. 

I decided to start medication immediately (actually took my first dose of Truvada on the same day I was diagnosed) because I didn't want to stand by and do nothing.  I wanted to fight.  My docs feel I made the correct decision and that treatment starting so early for me will help preserve my immune system.

What I find interesting and a bit disconcerting is the overwhelming optimism my docs have for me.  They went so far as to say I have an "excellent prognosis" and can expect a "normal lifespan".  They went on to say that the patients they currently treat have shown no long-term sides from the medications they are on, and since my liver and kidneys are currently healthy, that I really have no need to worry about any damage being done to them while on medication.

All of that sounds great, maybe a little too great to me after reading through some of the struggles many people on here have with their meds etc.....  So I struggle with what the real story is going to be for me, but I am doing my best to be cautiously optimistic.  I go back in to see the docs tomorrow, not sure if they are going to check cd4 and viral load again so soon but I will get results of an initial kidney function and liver function test.  I hope they come back ok, as that is a serious fear of mine.  Sometimes I feel like I'll die from kidney failure or liver disease rather than hiv.  I just don't know.

I am trying to find a support group around me too (I live in Los Angeles so it shouldn't be a problem).  Seeing other healthy people with this affliction will help me I think.

So that's my update, good bad and ugly.  Thanks for caring, it means a lot.

Seroconversion - late October 07
11/14/07 - CD4 190   VL >750,000
11/14/07 - Started Truvada & Kaletra
12/5/07 - CD4 851     VL 710
2/19/08 - CD4 604     VL Undetectable
5/8/08 -   CD4 829     VL Undetectable
8/12/08 - CD4 915     VL 80 (blip)
11/11/08 - CD4 967    VL Undetectable

Offline gpete

  • Member
  • Posts: 9
Re: Scared, please help
« Reply #10 on: November 27, 2007, 02:21:30 PM »
Hi Patrick,  Glad to see that U R somewhat coming around and feeling alittle better about things.    I don't have alot of "advice" other than to chill & be GOOD to yourself....cut yourself some slack!    I've known I've been poz for 20+yrs & have NEVER been ill....PERIOD!    I only started treatment about 4 yrs ago.    I've read many posts here & have to agree that alot of good info is here as well as advice.    Life will go on and YES U can still be somewhat in control!   I'd like to reccomend alittle book that might help you along your way.   "The Color of Light" compiled by Perry Tilleraas is a daily devotional of sorts (non-religious) that hits the nail on the head EVERYDAY for me!    U can order online for about $3 (used) from bn.com or amazon.    The shipping will likely be more than the actual cost.    This little book helps me start my day with a more positive attitude.    Be honest with your dr and KEEP your appts. and TAKE your meds EXACTLY as prescibed!    You still have alot to look forward to!
Be well my Friend!

Offline BirdBear718

  • Member
  • Posts: 105
Re: Scared, please help
« Reply #11 on: November 29, 2007, 09:20:58 PM »
Glad you came back and posted your feelings.

Trust your ID doctors.  They issued you an "excellent prognosis" -- embrace this!  You have HIV with an excellent prognosis -- I think they are saying this because they have observed how YOU are being proactive in your fight.  You have started meds to help your immune system -- on the same day!!!

Keep your liver and kidneys healthy.  Keep your body healthy. 
And....have fun.  It is your life. 
To steal a title off of ABC:  you have One Life to Live (it's the title of a soap opera).
But I digress....
Patrick:  take your meds, have fun, keep posting.  The people here will hold your hand when you want it, and even when you don't....which is a gift in itself.

 


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