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Author Topic: So scared.  (Read 6232 times)

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Offline Nika

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So scared.
« on: February 18, 2019, 10:21:58 pm »
I tested positive during pregnacy. I started treatment during the 16 weeks of pregnancy. I have a daughter - 5 years old - she is healthly. I am so scared about my baby and my daughter. I don't wanna die. I must live to look after my children. Father of my babies did this to me. I dont know where to look for help.

Offline Jim Allen

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Re: So scared.
« Reply #1 on: February 19, 2019, 03:11:27 am »
Hiya

I'm sorry to hear about the dignoisis you and your (ex) partner have, i can appreciate that this news was a scary schok to hear and, a lot to digest.

Regarding the fear of dying, well HIV with treatment is in itself no-longer a barrier to living a long and healthy life.

What is your Viral load and CD4'S looking like? 
You mentioned that you have started HIV treatment?

Regarding the fears you have, did you discuss these with your doctor if so what did they say?

Take it easy and let us know how you are getting on and if you have any questions.

Jim

https://www.avert.org/learn-share/hiv-fact-sheets/pregnancy

https://aidsinfo.nih.gov/guidelines/html/3/perinatal/224/whats-new-in-the-guidelines

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Offline Nika

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Re: So scared.
« Reply #2 on: February 19, 2019, 03:19:59 am »
Last month Cd4 1330, viral load under 20. My doctor says its very good. The doctor cannot sure me that the baby will be negative.
I dont know what to do with my partner. He has low Cd4
-50. He is also on treatment.
We were very happy and we got everything... Now there is a nightmare.
I cant live like this anymore. I think of suicide. I dont sleep at nights.

Offline Jim Allen

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Re: So scared.
« Reply #3 on: February 19, 2019, 04:09:53 am »
Hiya,

WOW - you have great lab results, I mean you are undetectable already so the medication is working and suppressing the virus. With the treatment you can live a long and healthy life.

Quote
The doctor cannot sure me that the baby will be negative.

Well nothing is a guarantee in life, however your HIV is well managed (treated), this combined with birthing strategies can lower the risk to 1% or less. That's a pretty solid and reassuring thought.

Quote
We were very happy and we got everything... Now there is a nightmare.
I cant live like this anymore. I think of suicide. I dont sleep at nights.

You are not alone, there are other people who have been though this and I know you are still digesting the news at the moment. I'm sorry you're in so much pain/fear and it can't be helping if you are suffering a lack of sleep & rest.

Sometimes the HIV medication can worsen or bring out such feelings so please do talk to your doctor right now if you are feeling suicidal. Go see them today and bang on the door of their office or if you can't go to your local maternity hospital and seek support.

Question, have you been offered any counselling post diagnosis or met other people living with HIV face to face?  If not you might want to give it a try by reaching out to your local ASO's (AIDS Service Organization) and seeing if they have any peer meetings.


https://aidsinfo.nih.gov/understanding-hiv-aids/fact-sheets/20/50/preventing-mother-to-child-transmission-of-hiv
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Offline Loa111

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Re: So scared.
« Reply #4 on: February 19, 2019, 04:37:38 am »
Hang in there! Things will get better. You absolutely will NOT die, nor anything like that. Just take your medication daily, be strict and serious about taking the pills.

I've 2 young children too. I was very worried about the future when I found out I have this health issue too, and I was very sick when I found out. However, I take the medication and things got better. Your psychology will get better as time goes forward.
Sure it is not easy, I still have days when it annoys me, but over all it gets better.

Offline Nika

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Re: So scared.
« Reply #5 on: February 19, 2019, 05:04:42 am »
We wanted to move to Germany... All family... I'm not sure it is safe for Kids now... I dont know what to do. I cant go back to my work in Poland. I am depressed and I cant look at my healthly friends. How two hiv plus people can be a family and rise children...
« Last Edit: February 19, 2019, 05:06:46 am by Nika »

Offline Jim Allen

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Re: So scared.
« Reply #6 on: February 19, 2019, 05:32:50 am »
Hiya

I agree with Loa111 post above..

Quote
How two hiv plus people can be a family and rise children...

HIV is not a barrier to having/raising a family,  my own daughter is 9 years old and my son is 7 years old now. As long as I take my treatment my HIV simply is not a concern.

As for moving to Germany, you move is within the EU right? That's always easier so  you could contact the German support org beforehand regarding moving & access to meds etc https://en.aidshilfe.de/

Jim 
« Last Edit: February 19, 2019, 05:35:27 am by JimDublin »
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Offline Nika

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Re: So scared.
« Reply #7 on: February 19, 2019, 06:04:11 am »
I know we can have accesss to the treatment if we have insurance... But i cant see our future... Still scared

Offline Jim Allen

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Re: So scared.
« Reply #8 on: February 19, 2019, 06:27:02 am »
Quote
But i cant see our future

What changed? Having a plan or thinking about the future in life is nice i suppose, things do sometimes change it like financial changes, kids, jobs, opportunities etc etc , life is always changing. 

Although HIV is not one of the things that would change my future plans or cloud it  because it takes me 15 seconds a day to pop my meds and that's it. Meaning HIV is not a barrier to my future.

Truth is nobody can predict the future and, we could be run over by a bus tomorrow or fall down the stairs and break our necks.  This was the same before your HIV diagnosis and, remains the same post HIV diagnosis. Nothing changed in that respect.

I know the diagnosis can be totally mind twisting at first, however you are not alone in this.

Take it easy

Jim
« Last Edit: February 19, 2019, 06:29:53 am by JimDublin »
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Offline TexasDragon

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Re: So scared.
« Reply #9 on: February 19, 2019, 06:43:32 am »
Nika -

I was in your shoes - heck we all were at some point - and it does get better!

I posted many times here what my ID doc said at my first appointment - when it was obvious I was terrified -

ĎIíd  be much more concerned about you if you had just been diagnosed with diabetes.í

And...

ĎStick to the plan, and die an old man.í

The plan is to get on and stay on meds. Iím on Biktarvy - and like most of the modern drugs Iíve read about - it has zero side effects for me. Itís like taking a daily vitamin - no more and no less.

I know that fear is paralysis, heck Iíve posted about that too, but keep moving forward. Each day is a little easier.

Peace and Blessings - know we care.
Exposure 10-04-2018
Dx 11-08-2018
1st Appt 11-15-2018
11-15-2018 Blood Draw - CD4 468 11% VL 316,000
2nd Appt 12-04-2018 - Hep A and B Vaccines
Start of Biktarvy 12-14-2018
3rd Appt 01-15-2019 - All Good - 2nd Hep B Vaccine
01-16-2019 Blood Draw - CD4 934 28% VL 98
4th Appt 04-16-2019 - All Good - Final Hep B Vaccine
04-16-2019 Blood Draw - CD4 873 30% VL <20

Offline Nika

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Re: So scared.
« Reply #10 on: February 19, 2019, 06:57:26 am »
Thank You all for support. I hope instead of diagnosis we are going to be OK.
Lots of love

Offline TexasDragon

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Re: So scared.
« Reply #11 on: February 19, 2019, 07:06:25 am »
Nika -

You ARE going to be ok - all of you! Will it be easy? Probably not emotionally easy - so keep reaching out.

YOU CAN CONTINUE TO WORK, DREAM, AND LIVE.

Make your own plan - and stick to the plan!
Exposure 10-04-2018
Dx 11-08-2018
1st Appt 11-15-2018
11-15-2018 Blood Draw - CD4 468 11% VL 316,000
2nd Appt 12-04-2018 - Hep A and B Vaccines
Start of Biktarvy 12-14-2018
3rd Appt 01-15-2019 - All Good - 2nd Hep B Vaccine
01-16-2019 Blood Draw - CD4 934 28% VL 98
4th Appt 04-16-2019 - All Good - Final Hep B Vaccine
04-16-2019 Blood Draw - CD4 873 30% VL <20

Offline Nika

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Re: So scared.
« Reply #12 on: February 19, 2019, 07:43:38 am »
It is not easy... Thats true...

Offline Expat1

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Re: So scared.
« Reply #13 on: February 19, 2019, 08:26:12 am »
Listen.  When we found out we were HIV+ all of use were upset, shocked.....

Many of us remember friends and lovers who died in the 1980s before we knew that HIV was a virus, and before any medicines existed to treat it. 

But its not 1980 anymore.  There are six classes of drugs (over 30 individual drugs) and established treatment routines now. 

You never have to be sick.  Follow your doctors advice.  Get Treated.

I was diagnosed 5 years and 1 month ago.  I had a high CD4 like you.   I got on medicine, the viral load came down 99.99% in the first month and has been undetectable under 20 copies ever since.   There was a little adjustment to medicines and I have been on my current meds for a little over 4 years.  In the past five years, I have never been sick. 

All I need to do is take my medicine daily and go to the clinic for blood tests every 4 months to make sure everything is fine.  (It always is).   

Take care of yourself.  Like someone else pointed out, there is only a very small chance that your child will get the virus, and if they were to, all it means is that they too would take medicine daily (like an insulin dependent diabetic) only no where near as bad since the treatment is oral not a shot and you dont have to prick yourself with a lancet to test your blood several times a day. 


Offline Jim Allen

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Re: So scared.
« Reply #14 on: February 26, 2019, 02:52:48 pm »
@Nika

How are you getting on?

Best, Jim
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Offline Nika

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Re: So scared.
« Reply #15 on: March 25, 2019, 05:09:03 pm »
Hello.
My baby was born by the c-section. Unfortunately my psycho health is bad. I am at the psychiatric hospital :( and trying to go back to life.

Offline Jim Allen

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Re: So scared.
« Reply #16 on: March 28, 2019, 03:32:07 pm »
Congratulations on the newborn baby  :)
Is it a boy or a girl?

Sorry to hear about your health challenges thought and wish you all the best, hopefully things will be better soon.

Best, Jim
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Offline Nika

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Re: So scared.
« Reply #17 on: April 05, 2019, 06:21:18 am »
It's a beautiful baby girl, very quiet and healthly. She got tested two times for hiv. She's negative. Next test will be at 18 months, but doctor says she is 99,99% negative. I am getting better. We are planning to spend beautiful holidays at the seaside in Croatia. My older doughter have never seen sea. We have got many things to show our girls in our lifes.

Offline Loa111

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Re: So scared.
« Reply #18 on: April 05, 2019, 09:22:28 am »
Thatís great news!  :)
How are you?

Offline Nika

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Re: So scared.
« Reply #19 on: April 05, 2019, 01:56:56 pm »
Still trying to cope with diagnosis.. I have got a lot of support.. My partner is fighting for me... He is in the same situation but he's thinking more positive than me.

Offline Jim Allen

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Re: So scared.
« Reply #20 on: May 01, 2019, 03:10:14 pm »
Glad to hear the partner is supportive.

I'm guessing with newborn and, everything going on you are not going to have much time to post here, but keep in mind that if you need us we are here for you.

 ;)
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Offline Simplicity45

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Re: So scared.
« Reply #21 on: May 25, 2019, 12:18:45 am »
Hi Nika,

I also tested positive during my first pregnancy, 25 years ago. I felt scared, alone, and believed my child would be motherless before he started kindergarten. At the time, the risk of transmission from mother to child with treatment was slim. The baby will be on a regimen for approximately 8 weeks to rid the body of any residual antibodies. I had a second child 20 years ago. I had a C-section because it was believed the unlikeliness of transmission was 99%. I understand how you feel, but you will get through this. Make sure you take the medication(s) prescribed and keep your prenatal appointments.

Offline Nika

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Re: So scared.
« Reply #22 on: May 29, 2019, 12:37:37 pm »
Thank you all for a lot of support  :) my baby girl has have 2 tests for hiv. She is negative. The last test will be at 18 months of age. The doctor says she is 100% healthly. Me and my partner go on appointments together and take medicines as prescribed. I take Isentress and Truvada and he is on Rezolsta and Truvada. We hope it's going to be OK and we will rise our children to adults :) My doctor is very supportive and happy that I feel better. Today I went to the shop and bought myself a lot of new clothes, changed hairstyle and relax. Life goes on. Sometimes I am still worried and angry, but I am trying to think more positive.

Greetings for all and lots of health!
« Last Edit: May 29, 2019, 01:03:17 pm by Nika »

Offline Jim Allen

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Re: So scared.
« Reply #23 on: May 29, 2019, 12:42:14 pm »
Hi Nika,

Fantastic update and, i'm happy for you that things are going well.
Enjoy this time that she is little, it goes by quickly. I'm finding it hard to believe my daughter is 9 already.

Best, Jim
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Offline em

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Re: So scared.
« Reply #24 on: May 29, 2019, 01:16:59 pm »
If my experience is helpful my children are teenagers now .

one of them just  had their high school prom. My wife asked me what I thought of him driving himself to prom. I while staring at him I brought him and wife over to a door frame in the house we live in where when he was about three or so he found a pen and started to draw on the wall. I had taken a scrubber to it when I caught him doing it. I started to cry thinking how did I miss him writing on the wall and what other mischief is going to get into during his life. I dropped the scrubber and thought I am a failure as a parent. When I looked over at the door frame he was scrubbing it. I thought things are going to be fine. 

so like this story things are going to be fine.

HIV should not be an obstacle  to raising children.

all the best to you

EM

Offline Nika

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Re: So scared.
« Reply #25 on: June 19, 2019, 03:35:43 am »
Hello everyone. Things are getting better and better. I am at the support group for polish women with this health condition. I also got a lot of support here :) - thank you once again. Tomorrow we are going on holidays.
My partner CD4 raised from 50 to 350 and he is also undetectable.
We bought a land and planning to build a house just like we dreamt of before diagnosis. The virus won't stop us!

Lots of love for you all :)

Offline Jim Allen

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Re: So scared.
« Reply #26 on: June 19, 2019, 05:01:53 am »
 :)

I think it's absolutely fantastic that you & your partner are not letting this bug get in the way of living your life.

Wishing you all the best on building the house, keep us posted on this project.
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Offline harleymc

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Re: So scared.
« Reply #27 on: June 21, 2019, 06:50:15 pm »
It sounds like you have the we the corner

Your resilience through this has been fantastic  you have dealt with three big challenges all at the same time  new baby, and new diagnosis for you and your partner.. despite your fears you have come through this.you will be stronger for all life's challenges in the future.

Well done.  Don't forget the nice things in life.

Offline CaveyUK

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Re: So scared.
« Reply #28 on: July 13, 2019, 10:47:52 am »
I'm a little behind on some forum posts so trying to slowly play catchup but I think this thread is the sort of post I could point other newly diagnosed folk to and say 'Look at this as an example of what we mean'.

From a seemingly hopeless outlook at diagnosis, to the realisation that not only life goes on, but you can thrive, continue nurturing a family and live a healthy and long life where plans can stand and dreams can still be fulfilled. Well, we all know it's true. but it's hard to see through the fog initially and it never ceases to be heart-warming when we see examples of it.

Nika, I'm so pleased for you and your family and wish you all the very best for the future.
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Offline Nika

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Re: So scared.
« Reply #29 on: November 06, 2019, 02:29:28 pm »
Hello everyone, its me again.
It has been more than year since my diagnosis... it was a difficult time for me and my family. I can see day by day that nothing really changed phisically with me or with my partner. We are both healthly. I hope it will stay like that for a looong time :) my cd4 raised to 1650. My doctor is happy and says that Iím healthier than some negative people. Of course sometimes I have got days when I am really sad and thinks that nothing makes sense...because of this shit...
But I hope it will be better.
We must raise a bit more cash to realize our plans with building a house. Propably we will move to germany to work and reach our goals faster.
Today I got a tattoo just like I planem before dx :)

I hope you are all allright!!!

Offline Jim Allen

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Re: So scared.
« Reply #30 on: November 07, 2019, 02:02:50 pm »
Hiya,

Wow, excellent update and your lab results are fantastic! Really glad to hear you are doing well and wishing you all the best with the move to Germany, do keep us posted!

Quote
Of course sometimes I have got days when I am really sad and thinks that nothing makes sense...because of this shit...

Yeah, look I think everyone has the odd day like that, I know I have the odd 1 or 2 days a year like that as well, but as long as it's getting less intense & frequent with time.

Don't be a stranger  ;)
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