Author Topic: Newly Diagnosed: Scared and Anxious (Read 6360 times)

MattH93 · « **on:** October 25, 2016, 04:59:01 am »

Hello,

I am a twenty-three old college student who has seemed relatively healthy but I have been put in the hospital, and still here, with pneumonia. I was recently diagnosed with HIV on Thursday. Unfortunately, my CD4 count is at only 4 and viral load is around 50,000. The HIV doctor did inform me that actually puts me in the later stage, AIDs. I am supposed to have my first appointment with the AIDs clinic next Tuesday about starting medication. I am so scared. Could anyone give me information about what might happen and what I can expect out of my treatment?

Jim Allen · « **Reply #1 on:** October 25, 2016, 06:57:49 am »

Hi

Sorry to hear about your dignoiss, and sorry to hear your scared.

Now this going to sound a bit mad, but try not to panic too much.
There are plenty of us that had your results and some of us that even had worse.

Look what to expect next week well each clinic/region might be different but they will take bloods for more testing, that is something to get use to and they will check your general health and discuss treatment options with you.

If you have any questions ask away and keep note of questions on notepad for your next appointment as well so you can ask your doc.

I don't want to give you information overload, however I have included below 3 links, one to the lessons and 2 that cover being newly diagnosed / starting treatment. To me it sounds like you in good hands with people who have a plan and that is getting you your follow-ups and treatment. :-)

Take it easy.

Jim

https://www.poz.com/basics/hiv-basics/newly-diagnosed
https://www.poz.com/basics/hiv-basics/starting-hiv-treatment

https://www.poz.com/basics/hiv-basics

Hito · « **Reply #2 on:** October 25, 2016, 07:21:21 am »

Hello Jim Dublin. I was only just diagnosed positive about a month ago now. I know how terrifying it is and I know every single thought that is running through your mind right now. Not just me, but probably every member in this forum.

I understand that you are unwell right now, but I wanted to share this advice with you. I will try to keep it short.

What helped me most the first week after my diagnosis were these things.

1. Studying about treatment and learning how it works and how it will help you fight this thing.

2. Talking with a close friend who won't judge you and will be there to talk about whatever you want. Life, love, hobbies.

3. Pillows. LOTS OF PILLOWS. They make me feel safe. Maybe they can do the same for you.

Please have faith in your medical team and loved ones. They will be your shoulder and will see you through this. I have every confidence that you will be healthy and happy in no time at all.

Remember, support is just a click away.

Tonny2 · « **Reply #3 on:** October 25, 2016, 07:40:12 am »

ojo HELLO MATT, WELCOME AND I'M SORRY ABOUT YOUR DX .

22 YEARS AGO, I WAS IN YOUR SAME SITUATION, IN THE HOSPITAL WITH PCP AND CD4=20, IF I MADE IT 22 YEARS AGO WHEN GETTING AN HIV/AIDS DX WAS STILL A DEATH SENTENCE, LET ALONE NOW, MEDICINES ARE WAY TOO BETTER, SO, YOU WILL BE FINE....I'M NOT SAYING THAT I WILL BE EASY, ESPECIALLY AT YOUR AGE,, BUT IN ORDER TO DEFEAT THIS VIRUS (CONTROL IT), YOU WILL NEED TWO THINGS, DISCIPLINE AND A GOOD ATTITUDE....DISCIPLINE BY TAKING YOUR MED/S AS ORDERED, GOOD ATTITUDE BECAUSE WE CAN'T DO ANYTHING ABOUT THE VIRUS, WE HAVE IT, WE FIGHT IT,....TRY TO MAKE A LIST OF QUESTION YOU MAY HAVE AFTER READING THIS FORUMS, SO YOU CAN ASK THE SPECIALIST WHEN YOU SEE HIM/HER....DO NOT BELIEVE EVERYTHING YOU READ ON THE INTERNET, FOCUS IN WHAT YOUR DOCTOR SAYS TO YOU, AND FOLLOW ORDERS.

AT THIS STAGE, AIDS, YOU ARE GOING TO NEED SOME PROPHYLACTIS MEDS, ASIDE OF YOU ARV, BATRIM AND AZYTROMICINE, ADD THIS TO YOUR LIST, I DON'T KNOW WHERE YOU LIVE, BUT DO NOT DRINK TAP WATER, WASH WHAT YOUR EAT AND WHERE YOU EAT, HYGIENE IS REQUIERED...I'M NOT A DOCTOR, I'M JUST SHARING MY EXPERIENCE, I LIVED WITH AIDS FOR FIVE YEARS DUE TO TREATMENT FAILURE TWICE, SO, YOU ARE GOING TO BE FINE, BE STRONG, I'M NIT SURE ABOUT THE PILLOWS, BUT YOU CAN TRY, REMEMBER, DISCIPLINE AND GOOD ATTITUDE, IT WORKED FOR ME, IT WILL FOR YOU...KEEP US POSTED, BEST OF LUCK...HUGS ojo

PS, SORRY FOR THE QUESTION, WHEN DID YOU START YOUR SEXUAL LIFE, YOU ARE VERY YOUNG TO HAVE AIDS...MORE HUGS AND YOU ARE GOING TO BE FINE

MattH93 · « **Reply #4 on:** October 25, 2016, 07:50:26 am »

Thank you all so much for the replies! They are genuinely appreciated and needed. Is there anyone I could talk to with just to get my mind off my diagnosis?

Tonny2, I became sexually active four years ago.

Tonny2 · « **Reply #5 on:** October 25, 2016, 07:58:00 am »

Quote from: MattH93 on October 25, 2016, 07:50:26 am

Thank you all so much for the replies! They are genuinely appreciated and needed. Is there anyone I could talk to with just to get my mind off my diagnosis?

Tonny2, I became sexually active four years ago.

oojo HELLO AGAIN MY FRIEND, CAN I CALL YOU "FRIEND"?....THANKS FOR ANSWERING, TOO BAD YOU WERE INFECTED, BUT LIKE I SAID, WE CAN'T TURN BACK TIME, JUST KEEP LOOKING FORWARD...BE A FIGHTER, THAT'S THE KEY.

YOU CAN USE PM TO TALK TO ANYONE, BUT YOU NEED AT LEATS HAVE POSTED AT LEAST TRHEE TIMES,, MAYBE THE MODERATOR CAN EXPLAIN THIS BETTER TO YOU...WE ARE HERE FOR YOU, YOU ARE NOT ALONE ANYMORE...YOU CAN TALK TO US ABOUT ANYTHING IS BUGGING YOU...AGAIN, BIENVENIDO Y ABRAZOS ...SI SE PUEDE!!! (YES WE CAN)...MORE HUGS ojo

MattH93 · « **Reply #6 on:** October 25, 2016, 08:09:14 am »

Would anyone have any tips on how to deal with the anxiety? I am still in the hospital because of my high heart rate and haven't really slept well at all while here. The doctor has started giving me dosages of the medicine since my CD4 is low.

Jim Allen · « **Reply #7 on:** October 25, 2016, 08:10:55 am »

Quote from: MattH93 on October 25, 2016, 08:09:14 am

Would anyone have any tips on how to deal with the anxiety? I am still in the hospital because of my high heart rate and haven't really slept well at all while here. The doctor has started giving me dosages of the medicine since my CD4 is low.

What medicine ?

Jim

MattH93 · « **Reply #8 on:** October 25, 2016, 08:14:26 am »

Quote from: JimDublin on October 25, 2016, 08:10:55 am

What medicine ?

Jim

Batrim, I believe.

Jim Allen · « **Reply #9 on:** October 25, 2016, 08:23:23 am »

Bactrim is an antibiotic used to prevent OI (Opportunistic infections).

The anxiety, look as you in hospital make sure to talk to them about this, I mean I could tell you to calm down but I don't think its helpful. What you need to know is yes your CD4's are low but your not the only one and people get treated and stay in treatment and live their lives, so people with HIV get married, go to work, fall in love, pay the bills, get old, might have kids and need a retirement plan etc etc just like everybody else.

Yes, its important to start treatment soon and you have that plan in place, no its not the end of the world.

Jim

Wade · « **Reply #10 on:** October 25, 2016, 08:33:06 am »

Hi Matt, I was in ICU in 1995 with PCP . I was was on oxygen for almost 2 weeks and was also on a bactrim IV. HIV treatment has come a long way since then and If I made it through you can too.

Try and rest and devote your energy towards getting well and not worrying.
I know that sounds easier said than done but a strong constitution will get you a long way. You are getting treatment and you will be fine.

Best, Wade

Tonny2 · « **Reply #11 on:** October 25, 2016, 08:35:13 am »

Quote from: MattH93 on October 25, 2016, 08:09:14 am

Would anyone have any tips on how to deal with the anxiety? I am still in the hospital because of my high heart rate and haven't really slept well at all while here. The doctor has started giving me dosages of the medicine since my CD4 is low.

ojo i replied before about some tips and i don't know what happened, hum...anyway, i asked you if you have talked to your doctor about your anxiety?, he/she might want to givw you something to make you feel better.

google "pranayam", let see if this help....take it easy, i know it's hard getting this dx, cry, do what ever make your feel better, crying is good for the soul...you will be fine, you are not the only one in this situation, unfortutnslly but you will survive...i big cyber hugs from all of us!!! ojo

MattH93 · « **Reply #12 on:** October 25, 2016, 08:39:53 am »

Quote from: JimDublin on October 25, 2016, 08:23:23 am

Bactrim is an antibiotic used to prevent OI (Opportunistic infections).

The anxiety, look as you in hospital make sure to talk to them about this, I mean I could tell you to calm down but I don't think its helpful. What you need to know is yes your CD4's are low but your not the only one and people get treated and stay in treatment and live their lives, so people with HIV get married, go to work, fall in love, pay the bills, get old, might have kids and need a retirement plan etc etc just like everybody else.

Yes, its important to start treatment soon and you have that plan in place, no its not the end of the world.

Jim

Great. Thank you for the information! I am trying to convince myself that I will be fine because I've received help and that's the first step.

virgo313 · « **Reply #13 on:** October 25, 2016, 10:09:07 am »

Hello Matt,

I have exactly the same CD4 count as yours. I was hospitalize too.

Briefly, this is is what i went through
(But you may not be going the same as what i went through)).
This is just to share & let you know you are at the right place now.

- Dr started Bactrim also
- They will be doing lots of tests. It ok, if they draw your blood or do other tests. That's does not means your have other issues. Basically, they would want to know if you have other "issue" before starting the proper medicine for you.
- Dr would just want to know a bit more before selecting the best HIV medicine for you. So do not think there is delay in giving you medicine
- My VL is much higher. So just relax. But it is not good to have detectable counts.

Will end here for now as i believe you have read a lot.
Just want to share that i have the same CD4 count (only 4) plus i did the nasty chemo. Now as you can read from below. my CD4 is around 150 in less then a year.

Again, assuring you that you be fine. Thanks

Ptrk3 · « **Reply #14 on:** October 25, 2016, 10:42:20 am »

MattH93: you will be fine. I was hospitalized in 2013 with pneumocystis (PCP) pneumonia and CD4's of nine. I was back at work fulltime within one month.

The meds today are great and you will be feeling better soon. First, the doctors will deal with your pneumonia, your immediate concern, then work on getting the HIV suppressed (they may even start you on antiretrovirals before you leave the hospital), and the appropriate prophylactics to keep you for a recurrence of pneumonia (presuming you have PCP pneumonia and other opportunistic infections such as Mycobacterium avium complex (MAC).

Many of us on this forum have been in your situation. If you remain adherent to your medications, once a regimen is determined for you, there is no reason why you won't live a long and happy life and accomplish all your goals.

Best wishes for a speedy recovery.

MattH93 · « **Reply #15 on:** October 25, 2016, 11:44:02 am »

I was brought my HIV medication just now. I have taken a Tivicay and Descovy. Anyone else that experienced these together?

Jim Allen · « **Reply #16 on:** October 25, 2016, 11:59:38 am »

Yeah, I had Tivicay and Truvada for about a year. (Truvada is the older version of Descovy so similar combo )

It knocked the hell out of my viral load :-)

Jim

harleymc · « **Reply #17 on:** October 27, 2016, 08:07:21 pm »

Dear Matt
Big hugs to you from a 31 year survivor. I was 23 when diagnosed and am 54 now. My lowest cd4 count was 10 and since starting treatment I have never been hospitalised for anything related to HIV.

I don't have a crystal ball or a tarot pack to foretell your future. You may have some bumps and potholes in your road and or you may have a long and healthy life or some mix of the two.

Enjoy hospital while you can, it's rare in life to get breakfast in bed and be the center of attention. Try and keep your mind busy, do you have any assignments that you can do distance work on for college? Can a friend or family member bring a book or two for you to bury yourself in?

Anxiety and depression are relatively common in people with HIV and your mental health is as important as your physical health. If you can get access to a psychologist have a chat with him or her about mindfulness and cognitive behavior therapy. These are great tools to keep your mental health good as you travel through life.

Take care my friend.
Harley

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Author Topic: Newly Diagnosed: Scared and Anxious (Read 6360 times)