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Author Topic: Newly diagnosed in pregnancy - looking for support and kindred spirits  (Read 10155 times)

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Offline usernotdefined

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Hi Ladies,

I am new to this forum, though I have been looking at the boards for the last few days whilst trying to get my head around my diagnosis. I am really looking forward to being able to share my thoughts and fears with you and share the benefit of your experiences living with HIV.

I am 29 and live in the UK, I am currently 12 weeks pregnant with my second baby (my first born son is nearly 12 so a rather large age gap there!) and received the news that my HIV antibody test, part of the standard antenatal screening panel, was positive on 14th December. On the 23rd December I received my first CD4 and VL (CD4 533 35% VL 3,500) so I have spent the Christmas period dreading the fact that I will have to start on Combivir and Kaletra on 8th Feb.

My diagnosis was such a shock  and has come at the end of a pretty dramatic year for me, I found out my husband was unfaithful at the beginning of the year, filed for divorce, met my new partner, received an abnormal PAP smear result in the summer, had cancerous cells removed, found out I was pregnant in November and was diagnosed with HIV in December!

I feel so stupid for putting my health in the hands of a man by not insisting on a condom every time. I feel so naive (I'm an educated woman, I work in clinical research ffs!!)for never considering this as a risk and getting myself tested over the last 11 years - how long have I been poz? I'll probably never know, like I'll never know for certain that it was my ex husband who infected me.

I've had some really rough days and bouts of uncontrollable sobbing but I'm trying to concentrate on the positives (other than my HIV status!) -

  • Better to know now than when I am lying in the ICU with PCP and as a last resort the Drs run a HIV test
    With the correct precautions my baby should be fine
    Despite unknowingly exposing my new partner for 9 months, thank god he has tested negative

I didn't intend on such a long initial post, so thank you to those of you who stuck with it!

Offline Sweet_C

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #1 on: January 01, 2011, 02:56:32 AM »
Welcome and congratulations on your pregnancy!!  I'm also pregnant and expecting my first child in February.

I can't imagine how tough it must have been to have found out you were poz when you were pregnant.  I know that must have been quite a shock.  I love your positive attitude.  I've been poz for a little over two years, and know there is so much that we all should be thankful for. 

My diagnosis was one of the most shocking things to happen in my life.  I thought my life was over, but I soon learned it was only the beginning.  The biggest lesson I've learned is that even though we're poz, life will go on and it's up to us whether we learn to be happy in spite of it.  Since learning of my diagnosis, I've gotten married and am having my first child, so HIV hasn't stopped me from living my dreams.

I also have felt stupid at times for ending up poz, but I have become much more forgiving on myself as time goes on.  I just think of the millions of women who have unprotected sex every day with no consequences.  Some even have happy endings.  I've stopped beating myself up over getting infected by doing something that that is just a normal part of life for most people.  The only difference between me and those other people is that I got a virus and they didn't.  It can happen to anyone.

As for the future, I can tell you that managing HIV during pregnancy is easy as pie.  There will be almost no difference between your prenatal care and that of an HIV negative woman.  Once you're undetectable, everything will go smoothly.  Most people tolerate the drugs very well, although you may have some side effects at first.  Since you're pregnant, it may be hard to know whether the side effects are from the drugs or the pregnancy.  I'm on Combivir, Reyataz and Norvir, and I had almost no side effects other than a headache the first day I was on it.  I also have some diarrhea if I don't take the Norvir with food, but nothing major.  You should become undetectable very quickly because your VL is very low.

Anyway, hope everything goes well in your pregnancy! 
Tested positive on September 11, 2008

Offline anniebc

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #2 on: January 01, 2011, 03:20:46 AM »
Hi there

Welcome to the forums and congratulations on your pregnancy.

I can't really add more to what Sweet C has said, except a few little tips maybe.

1..Learn about your treatment options and make a plan.

2..Learn about your delivery options and get a referral to a doctor with experience in HIV and pregnanct, and an obstertrician.

3..Male a delivery plan with options according to how well your viral oad is controlled during pregnancy.

4..Read as much as you can about your situation, but don't go overboard, too much info will drive you mad.

5..And the most important thing of all...have a baby shower and get a truck loads of presents.. ;)

Take of yourself and baby.


BTW..I'm way passed the baby stage, but I have 2 daughter's and 3 daughter-in laws...11 grandkids with two on the way, and a great grandson..so I know a little about babies.. ;D

Aroha
Jan :-*
« Last Edit: January 01, 2011, 03:24:58 AM by anniebc »
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline usernotdefined

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #3 on: January 01, 2011, 09:39:36 AM »
Sweet C - thank you so much for your support, it's great to hear it straight from someone who is on HAART during pregnancy - it means much more than from my Dr who is still in the "tell her everything is going to be fine and dandy or else she might throw herself off the roof" camp.

In time he'll get to know me and understand that I would rather be told all possibilities than be blind sided by something I wasn't expecting.

You are right that my diagnosis has been a terrible shock - to find out when you are pregnant and emotional anyway is awful, and to know that you have very little time to ignore the reality as treatment starts soon, plus being told all this before the end of my first trimester when I was still worried about whether my pregnancy was viable due to the treatment I had on my cervix in the summer - all in all I have been a bit of a mess inside my head but trying to remain swan like and serene on the outside to keep things normal for my son and my partner.

I think the thing I am finding hard to get my head around at the moment (among other things) is that the next 5 months on treatment will be a window into what the rest of my life is going to be like, and that after my baby is born the clock will start ticking as far as my CD4/VL numbers go until I have to take meds for my own health rather than just as a prophylaxis in pregnancy.

How did / does everyone else deal with the ticking down of their CD4 count, waiting for the inevitable Dr visit that signals the start of lifelong treatment?

Offline usernotdefined

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #4 on: January 01, 2011, 09:51:15 AM »
Hi Jan,

Thanks for the tips. So far things seem to have been handled quite well in terms of the coordination between the increasing number of people now involved in my care. According to my HIV specialist nurse she sees 1 or 2 pregnancies each year in her cohort so I am part of a relatively exclusive group [suits me down to the gorund, I never was one to follow the crowd  ;)]

With regards delivery, at the moment I am inclined towaards an elective c-section just because my first labour and delivery was not altogether straightforward and a c-section means I don't have the worry about my family and my partner's wanting to be in the delivery room and the possibility that something could inadvertently be said by one of the midwives / Drs about my status - that's just my initial thought and I may change my mind on that as I get more used to the idea  ???

Thanks also for the welcome, it was quite a scary step to take (does that sound pathetic?)

 :)

Offline Ann

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #5 on: January 01, 2011, 10:06:56 AM »
Hi nud, welcome to the forums.

The UK based i-Base has a very good guide to hiv and pregnancy that you might want to download and read. You can read it directly on the internet or you can download the PDF and print it out.

http://i-base.info/guides/pregnancy

Be sure to check out their whole website while you're there.

http://i-base.info/home/

With your very low viral load it is totally possible for you to stop treatment once the baby is born. There is another mother here who did just that - also in the UK - and she's doing fine and so is her baby.

I've been poz since 1997 but I'm still not on meds because my numbers have been ok. Again with your low viral load (and very good CD4s) you may not need treatment for a while after you have the baby. So don't think that once you start because of the pregnancy that's going to be it for life.

I'm also sorta-kinda in the UK - I live in the Isle of Man. :)

Although I'm sorry to hear about your diagnosis, I sure am glad you found out in plenty of time to prevent your baby from being born poz. That's great! You'll both be fine.

Ann
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline usernotdefined

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #6 on: January 01, 2011, 03:12:03 PM »
Hi nud, welcome to the forums.

The UK based i-Base has a very good guide to hiv and pregnancy that you might want to download and read. You can read it directly on the internet or you can download the PDF and print it out.

http://i-base.info/guides/pregnancy

Be sure to check out their whole website while you're there.

http://i-base.info/home/

With your very low viral load it is totally possible for you to stop treatment once the baby is born. There is another mother here who did just that - also in the UK - and she's doing fine and so is her baby.

I've been poz since 1997 but I'm still not on meds because my numbers have been ok. Again with your low viral load (and very good CD4s) you may not need treatment for a while after you have the baby. So don't think that once you start because of the pregnancy that's going to be it for life.

I'm also sorta-kinda in the UK - I live in the Isle of Man. :)

Although I'm sorry to hear about your diagnosis, I sure am glad you found out in plenty of time to prevent your baby from being born poz. That's great! You'll both be fine.

Ann

Thank you Ann, I had a copy of the i-base pregnancy guide from my HIV specialist nurse and will definitely check out the rest of thes site, despite my background this is still a steep learning curve and has had me digging out my lecture notes and pharmacology text books over the last week or two.

 :)

Offline BT65

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #7 on: January 02, 2011, 05:04:03 AM »
Hi there, and welcome to our ladie's family.  I'm so glad, like Ann, that you found out in time to protect the baby (and yourself).

Although I wasn't pregnant when I found out, I can relate to the being devastated.  I was diagnosed 21 years ago, right after my first husband died.  I really don't believe he knew he was poz; he was a terrible alcoholic, and drunk most of the time, so I'm sure his health was the last thing on his mind.  When the doctors did the autopsy, they found PCP, though that's not what's listed as his cause of death-"acute alcohol intoxication" is.  He drank so much, he shut down his heart, at the age of 29, and drinking only beer.  (hard to imagine, I know).

Anyway, sorry to go on a rant about that.  You were asking how people dealt with knowing they would have to go on meds for the rest of their lives.... well, I just look at it as something else to deal with.  And luckily there are meds today, which are so much better than the meds I took during the immediate years after testing positive.  Not that they are 100% foul proof, but they are a lot better.  And the medical profession seems to know how to handle things that come up with HIV better than they used to. 

I got on disability (I live in the US, so it's Social Security) back in like '93 or '94.  So, it's been a long while.  Just within the last 5 years my health came under control, and I've been able to go back to school, and am working full-time now.  That probably means that'll end the disability, but I'm feeling well enough to try this out.  I guess I'm saying this, because there is life after HIV.  I went through some pretty rough times, even a couple times my heart stopped (once for about 5 minutes).   But life goes on. 

I'm sure you'll do fine.  Remember we're here for you, and will always be for support or whatever else.  Again, welcome, and I hope to hear more from you!
  L-
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline TabooPrincess

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #8 on: January 02, 2011, 03:41:09 PM »
Hey!  I'll echo what the other ladies have said...I'm from the UK too and had my first baby this time last year and he's doing fine, you will both be fine too.  Glad you found us - I couldn't have got through my diagnosis initially and then the pregnancy without some of the ladies on here.  It's a scarey time and we can all identify with that.

Big hugs to you and your bump and keep us informed how you're getting on xxx
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline Ann

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #9 on: January 03, 2011, 07:24:23 AM »
I'm from the UK too and had my first baby this time last year...

Good lord, has it been a year already? Time flies. He'll be a monosyllabic teen before you know it, so enjoy him while he's still little and grunts only mean he's filling his diaper instead of a way of saying hello, I'm going out, feed me, leave me alone etc.  ;)

I can't believe my little baby is almost 24! I just don't know where the time goes.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline usernotdefined

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #10 on: January 04, 2011, 03:53:56 PM »
Hi Ladies,

Is it just me or is the return to work after Christmas and the new year really depressing? A dreary grey day here that is only made worse by the 1000+ emails I was confronted with..... Maternity leave seems sooooo far away.

In the meantime, I have to sort out travel insurance as I won't be covered on my company's policy now (and even if I were it would mean disclosing my status to them which I am certainly not ready for) and I am off to the US in a few weeks for a conference - I'm hoping to know the sex of my baby by then so that I can batter my credit card while I am there!!

Today is actually a good day. Yesterday and the day before were awful. I spent 48 hours wallowing in misery and self pity, wondering if i should actually be bringing another child into the world, feeling guilty for putting my partner at risk, wondering if we will be ok as a couple or if this virus will come between us, I am sure you ladies all know the toxic thoughts running through my mind on days like that.

And then today, despite the grey clouds in the sky, the big black cloud over my head and heart has been blown away.......for now

Offline Sweet_C

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #11 on: January 08, 2011, 05:48:25 AM »
Glad you're feeling better.  I think you'll find that as time passes, HIV will take up less and less of your mental energy.  I go through long stretches of time where I kinda forget that I have it and it's really mindblowing.  Once you get used to the idea of it, your life will settle back into the same state it was before you were diagnosed, so if your life was good you will go back to feeling good.

Yes, the decision on starting meds can be a very difficult.  For me, I felt much more in control of life and the virus by taking meds.  I started meds very soon after I contracted the virus, so I could have waited a few more years.  Looking back on those days, part of my decision was based on panic.  At the time I was more afraid of what the virus would do to my body than the long term side effects of the drugs.  I was mentally ready to prepare to take the drugs for the rest of my life.  Since I live in the U.S., my biggest worry was being sure I would always have access to the drugs since we aren't guaranteed life saving health care and its so expensive.  In my darker times, I also get scared of what may happen if there is some sort of disaster and I don't have access to my drugs, although I guess if that were to happen, I'd have more pressing issues to think about. 

The good thing is that you have a lot of time to think about it and make the decision, because once you make that decision to start, you can't change it.
Tested positive on September 11, 2008

Offline Ann

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #12 on: January 08, 2011, 06:17:27 AM »

In the meantime, I have to sort out travel insurance as I won't be covered on my company's policy now


Hi UND, I missed your reference to travel insurance the other day when I (hurriedly) read your post. Sorry!

It can be really difficult to get decent travel insurance with a pre-existing condition and if you do not disclose your pre-existing condition when you take a policy out, if you happen to need it for any health problem while abroad, it can make your policy null-and-void. (And you really do NOT want to end up being liable for health care costs while in the States! The costs are extremely high.)

Fortunately, there is a company in the UK called "Freedom Travel" who takes pozzies no problem. They go by your CD4 count and VL. If you're not on meds, they go by your CD4 count and as long as it's over 500, your premium won't be any more than anyone else's. If you are on meds with an undetectable VL, the same thing applies. They do not demand any documentation either, they just take your word for it over the phone.

You can apply for this insurance even just a few days before you travel. I've always gotten my policy through the post very quickly - the next day if I've rung before noon.

I used this policy a few times when I had a negative partner - and as my CD4s were over 500, our premiums were the same. My current (poz) partner has used them twice now when he went to Thailand and was very happy with the low cost and potential high return (should it be needed). We've all been happy with the coverage and the company.

It's a very good policy and covers theft, flight delays and cancellations, lost baggage, damaged cameras etc, lost or stolen money as well as a very good health policy complete with covering the cost of repatriation should death occur.

http://www.freedominsure.co.uk/index.asp

01223 446914

Hope this helps - and I hope you see it in time!
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline usernotdefined

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #13 on: January 14, 2011, 07:03:08 PM »
Hi Ladies,

It's been a crazy week, I had meetings in Switzerland at the beginning of the week and have been playing catch up ever since. Have finally finished work emails at nearly midnight on Friday night and thought I would catch up with you all on my week.

I had my first appt with my obstetrician this week, and it didn't go as well as I had anticipated. I had been told by my HIV nurse that this consultant has a special interest in HIV and childbirth and was one of the main advocates of vaginal deliveries within my local area. All good so far.

Unfortunately when I got there, she didn't even know my HIV status (she thought I had been referred to her because of the treatment I had for cancerous cells on my cervix back in the summer and any risk that may pose to my ability to carry this pregnancy to term) so I was a bit put off guard having to share with her the story of my diagnosis - I had expected that she would already know all this so that the appointment could be more about my pregnancy than how/when I contracted the virus.

The consultant has decided that I need an ultrasound scan of my cervix in the next week to make sure it all appears ok, and when she was explaining this to me (obviously a trans vaginal scan - nice  ::)) she told me that it was my responsibility to disclose my status to the sonographer to ensure that she took the necessary precautions!!!!!!!! >:( I straight out could not believe this and challenged her on it straight away, explaining that my understanding was that universal precautions would be used and that it should not matter my status - much less the fact that it was more than unfair to expect me, only 3 weeks after diagnosis, to have to disclose to someone who probably does not knowingly come intto contact with positive women on a daily basis, so who knows what that person's reaction will be?

I've spoken to my HIV nurse about this today to explain how upset I was at this.

Ladies - What do you think? Am I over reacting (I wonder sometimes how much the pregnancy hormones are making me go into meltdown where I wouldn't normally)

I am seeing this Dr again on the 24th and I don'[t want our Dr/patient relationship to be a constant battle of her issuing orders and me challenging them...

UND xxx

Offline emeraldize

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #14 on: January 14, 2011, 11:37:10 PM »
Hi Und,

Welcome. I, too, would have reacted negatively to the way you had to define your status (that it was not part of your chart) and would also have called her on her advising you to inform the sonographer.

What you did not include was her reaction to challenging her with reference to universal precautions. Did she respond at all?

Best,
Em

Offline usernotdefined

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #15 on: January 15, 2011, 06:25:47 AM »
Hi Em,

Well spotted, I wasn't very clear there. After I challenged her instruction for me to inform the sonographer, using the universal precautions argument, she told me that it was still my responsibility to tell the sonographer as if she wasn't careful when removing the sheath from the vaginal probe she could innadvertently "flick" my vaginal secretions!! Presumably her fear is that this athletic flicking would transport said secretions directly into the vagina of another woman and confound all medical knowledge by infecting her immediately!!

Regardless of the complete improbability of the above scenario, my point remains that if a vaginal ultrasound is a defined "exposure prone procedure" should it not be the case that my consultant passes on pertinent information to the sonographer? The last thing I need right now is to have the possibility that the sonographer has an issue with HIV and refuses to scan me once I disclose.

Offline emeraldize

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #16 on: January 15, 2011, 09:27:34 AM »
Hi Und,

Interesting predicament. It breeds a couple more questions for me. First, is whether your care is occurring within the same medical facility or is the sonographer independent of your doctor? Second, with such an incredible envisionment on her part that vaginal secretions would be "flicked" (her words?) on any other surface that could then be possibly transferred to another woman's vagina indicates her lack of knowledge of the fragility of the virus. Further, if she believes that could occur then she doesn't trust that the sonographer has good practices because if this could/would occur, there are transmissible STDs that could withstand such a setting and the sonographer certainly does what's indicated to prevent this.

I do agree with you that she should be conveying this information. I'd like to, were I you, bank on the sonographer having a better understanding of her process and the typical precautions she would take for herself and all other persons who would come in contact with the equipment. In that you don't want to risk a failed appointment on site, can you call her directly and explain this situation in advance? Is travel/timing such that it precludes visiting her in advance to have a face-to-face conversation about this?

I'm guessing you've also run through your mind if your doc's knowledge is so thin in this area, is she the right doctor for you? I don't know what your alternatives are, but if this is an example of things to come, you might want to find out in case you decide to bolt.

Best
Em

Offline Ann

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #17 on: January 15, 2011, 10:38:13 AM »
UND, the sonographer absolutely has NO reason to know your hiv status. It's irrelevant to the procedure. As for how she handles your vaginal probe, it should be no different to how she handles anyone else's. That's why they're called UNIVERSAL precautions.

You are NOT overreacting. This kind of crap from people in the medical profession who should know better really makes my blood boil. >:(

I'd be really tempted to report this woman.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline usernotdefined

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #18 on: January 15, 2011, 02:45:44 PM »
Hi Em,  yes here in the UK the consultants refer you to practitioners within the same hospital or group of hospitals, so the sharing of critical information among the multi disciplinary team should be easy, or at least straightforward!

And yes, "flicked" was her exact word! Which in itself doesn't exactly inspire confidence huh?

Ann - thank you, it is nice to know I'm not just making a big deal of this. As for taking this further, I have discussed my concerns with my HIV nurse and she is going to get my HIV consultant to speak to her before my next appointment to tell her to back off and just deal with my pregnancy amd that the HIV will be managed by his team. I'm hoping this will be enough and that l won't have to make a complaint about her. My worry is that if I burn my bridges with her I will have to travel much further for my antenatal care and for the birth.

My HIV nurse is also going to look into the scan situation and get back to me.... Either way I just hope the scan goes ahead without any further problems and that my next appt with this obstetrician goes more smoothly on the 24th.

UND x

Offline Ann

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #19 on: January 16, 2011, 09:56:09 AM »
The last thing I need right now is to have the possibility that the sonographer has an issue with HIV and refuses to scan me once I disclose.

I've been thinking about your fear that the sonographer might refuse to scan you if she knows you're poz. I do not believe it would be legal for her to do this.

I used to have a really good link to information on how the DDA (Disability Discrimination Act) applies to people with hiv, but they changed the name of the act (to the Equality Act 2010) and some of the details in 2010 and so the link I had now returns a "page not found" error.

I still have one working link - A guide to the Disability Discrimination Act for people with HIV, cancer and MS - but I have been unable to find any specific information on how the new act may or may not have changed the info in that document.

The pertinent information in that document is...

Quote
The Disability Discrimination Act (DDA) makes it unlawful for you to be discriminated against in:

    * employment and occupation
    * trade organisations and qualifications bodies
    * access to goods, facilities and services
    * the management, buying or renting of land or property
    * education

I'm 99.99999% certain that "services" includes medical services. The sonographer would have to go through some interesting contortions in order to not appear to be discriminating against you if she were to refuse to scan you.

Here's some information on the new act:

Equality Act 2010

Information on the 2005 DDA (as it relates to hiv) can be found here.

I'm glad your nurse and consultant are going to look into this for you and I hope they can take care of it. (It sounds like the obstetrician could use some aids awareness training and I hope they provide it for her.) Good luck - and please do take the time to read up on your rights as a person living with hiv. It never hurts to know this stuff.

Keep us posted on what happens on the 24th. And good luck with your trip to the States. Did you get your travel insurance sorted out? By the way, as you travel often, you might want to check out the yearly policy that Freedom offers. It may be cheaper and more convenient for you - and your employer may help out with the cost if they used to provide your travel cover for you before your diagnosis. Freedom does corporate accounts. Good luck!

Ann


edited to add...

I found a page that deals with disabilities under the new act - and hiv is still included as it is considered a "progressive" condition and we are covered under the act from point of diagnosis.

Disability and the Equality Act 2010

And health care (and social services) are definitely included in "services".

Rights of access to health and social care
« Last Edit: January 16, 2011, 10:22:25 AM by Ann »
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Sweet_C

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #20 on: January 22, 2011, 07:48:21 AM »
UND, that is crazy what you had to go through with this doc.  She sounds very ignorant and I wouldn't want her anywhere near me or my baby, but I guess it would be tough to have to travel so far to see somewhere else.   I hope your HIV nurse can knock some sense into her.  Sorry you had to go through this.
Tested positive on September 11, 2008

Offline usernotdefined

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #21 on: January 28, 2011, 01:58:16 PM »
Ladies, thank you all for your words of support and especially Ann for being the source of knowledge to answer all my questions and arm me for the battles ahead  :)

Work has been crazy busy so I have some updates to make!

Firstly, the internal scan went ok, whatever discussions happened or did not happen they had no effect on my treatment. Most importantly my cervix looks ok so I won't need to have it stitched, such a relief!

The appt with the obstetrician that same day was a complete waste of time, they kept me waiting for nearly an hour and then palmed me off on an incompetent registrar instead of the consultant. The upshot is that I have another appt to see her at the end of Feb which is fine by me, no decisions about my plans for delivery have to be made before then.

On the same day as these appts I decided to squeeze in another and had my gender scan - I'm having a boy  ;D

So now I am packing for my trip to PA on Monday, wondering what I am going to wear as none of my work suits fit anymore and none of my winter coats meet in the middle!

UND xxx

Offline emeraldize

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #22 on: January 28, 2011, 05:15:10 PM »
UND,

Great to get an update. Congrats on bringing a boy into the world. And good that the scan went so well.

When you note PA, are you coming to the US? Or does that stand for something in the UK?

Em

Offline usernotdefined

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #23 on: January 29, 2011, 05:51:04 PM »
Hi Em,

Yes I will be in the US for a week from Monday for work, hopefully this will be almost my last trip across the Atlantic before I have my new little boy  :)

My bf went up in the loft today to get me down a suitcase and he got me a huge one knowing how much baby shopping I will do while I am there, my work commitments are due to be done by Friday lunchtime so I have the whole weekend to myself before my flight back  ;D

UND x

Offline anniebc

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #24 on: January 29, 2011, 07:48:56 PM »
Enjoy your trip and take care, my daughter-lin-law is due her wee boy next week (4th boy)..they live in Morecambe.

Just keep us updated when ever you can.

Aroha
Jan :-*
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Never knock on deaths door..ring the bell and run..he really hates that.

Offline usernotdefined

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #25 on: February 10, 2011, 07:25:57 AM »
Hi Ladies,

I made it back from the US safe and sound, unlike that tragic girl who went to Philly to have her bum inflated

http://www.dailymail.co.uk/news/article-1355080/Claudia-Aderotimi-thought-illegal-implant-make-hip-hop-star.html

I had my history and examination appointment with my consultant on Tuesday, the day after I got back from Philly. That definitely brought me back to earth with a bump. I had been able to ignore things the whole time I was away, nobody who knows my status was with me, and for a whole week I was just a normal pregnant woman, working all week and shopping all weekend. I actually shopped so much I had to check in a second bag for my return flight!

Anywho, back to the appointment.... My Dr had my meds all ready for me and we went through those, as well as going through my first blood results again. My resistance testing came back clear which is a bonus, but my HLA B5701 was positive so no abacavir for me in the future.


I started the Combivir and Kaletra on Tuesday evening, so have taken dose 4 this morning and am feeling ok apart from some nausea, diarrhoea and feeling a bit groggy. After imaginging much worse I think I can cope with this.

I was surprised at how emotional I have been over the last 24 hours, it really has made my diagnosis real, starting on treatment, especially as it comes at the same time that I can feel my little baby wiggling around inside me. I feel so protective of this little baby and so guilty that I have to take these toxic drugs for the next 20 weeks  :'(

Offline emeraldize

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #26 on: February 10, 2011, 07:40:20 AM »
UND

Glad you made it back safely. I would envision your pregnancy would make this time all the more emotional--but there's no denying that diagnosis and onset of treatment stirs anyone up--male, female, pregnant or not.

Shopping was a good way to administer therapy! Good news to learn you've got a wriggler to remind you of things other than a virus. Now I'm going to go back to read the link you provided.

Em

what a sad story--she was lovely, just as she was
« Last Edit: February 10, 2011, 07:50:13 AM by emeraldize »

Offline Sweet_C

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #27 on: February 10, 2011, 09:19:54 PM »
UND,

So glad you enjoyed your trip to the U.S.!!  It's nice that you were able to enjoy pregnancy without having to think about HIV for a while.

About the drugs, I know it is an adjustment for you, but rest assured that the drugs won't hurt your baby at all.  I'm also on Combivir during pregnancy.  I switched my treatment regimen to it when I started trying to conceive because my doctor told me that she could literally guarantee me that the drugs were 100% safe for my baby.  She said that combo has been around forever and tested extensively and no ill effects whatsoever on babies have been associated with it.  It's weird because when I started my old combo (Isentress/Truvada), I had no side effects whatsoever, but with the Combivir I had headaches for the first week and occasional diarrhea.

Anyway, I hope you are able to enjoy the rest of your pregnancy.  Once you are undetectable, everything will be smooth sailing!    :)
Tested positive on September 11, 2008

Offline Snowangel

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #28 on: February 12, 2011, 04:36:52 PM »
Good lord, has it been a year already? Time flies. He'll be a monosyllabic teen before you know it, so enjoy him while he's still little and grunts only mean he's filling his diaper instead of a way of saying hello, I'm going out, feed me, leave me alone etc.  ;)

He is GORGEOUS!!! Such a cutie pie!!

Welcome!!
I have had 4 kids while being poz.  One in 98 and 3 in 03.  (Please don't type the t word) :)
I have kept in touch with a few of the prego ladies on here either thru text or facebook.  I am not out of the poz closet and don't talk about being poz there.
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

One thing you can't recycle is wasted time.

Offline riverlassie

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #29 on: February 19, 2011, 11:56:48 AM »
Don't you worry about how long your postings are. You need to vent , cry , scream or laugh out loud you feel free to do so. I am sorry that you found yourself being pos ( that seems like an oxymoran phrase   lol )  and don't even strain your brain trying to figure out how this happened. Just focus on living life . You will in time see that this is just one of lifes in-conviences.  And is very managable.   It's the rest of the " normal " life that will drive you crazy.  lol You are at the right place to seek and speak.........
Worrying is like a rocking chair. It gives you something to do but doesn't get you anywhere.

Offline usernotdefined

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #30 on: March 29, 2011, 01:03:41 PM »
Hi Ladies,

So, it's been a while and probably about time I checked in and gave you all an update.....

The meds are ok, I'm over the worst of the side effects as it has now been 2 months since I started taking them, though the Kaletra still gives me diarrhoea. I've gotten used to it though and just carry on taking imodium to control it.

Other than that the only side effects I have are anaemia and weight loss - I am now the same weight at 25 weeks pregnant as I was pre pregnancy. Bearing in mind I put on around 3 stone (42lbs) with my first pregnancy 12 years ago, this is actually a minor miracle! I had prepared myself to blow up like a balloon with this pregnancy but at the moment I just have a bump, no weight anywhere else!

I will have more bloods in 2 weeks to check my CD4 / VL, but the last time it was checked was 3 weeks after I started treatment and my VL had already dropped from 6,000 to just 60 copies, with an increase in my CD4 from 31% to 37%. All in all a pretty good response and my Dr is confident that my next results will show that I am undetectable now.

I am currently signed off work sick due to fatigue, which is probably a combination of meds, pregnancy and anaemia. Resting doesn't come easily to me and I am going a bit stir crazy  ;D

Hope all you ladies are well xxx

Offline Sweet_C

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #31 on: March 29, 2011, 02:05:47 PM »
Great to hear that you are doing so well!!
Tested positive on September 11, 2008

Offline emeraldize

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Re: Newly diagnosed in pregnancy - looking for support and kindred spirits
« Reply #32 on: March 31, 2011, 04:45:27 PM »
Ditto. Good to hear from you.

Offline usernotdefined

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Hi Ladies,

Another quick update from me, I'm now 36 weeks pregnant and so looking forward to meeting my little boy soon. I'm scheduled for an elective c section on Fri 24th June!!! I had the option of a vaginal delivery as I've been UD for over 2 months now thanks to the Kaletra and Combivir, but due to issues around keeping my status from family and friends plus arranging childcare for my son etc etc the c section is the easiest way for me to maintain some control over the whole process.

I'm counting down the days now ladies, it hasn't all been easy as you will know from previous posts and I do still encounter astonishing levels of ignorance within the NHS but I have resigned myself to being the educator and am getting more and more confident in being my own advocate and challenging outdated practices and ideas that I come across.

I hope you are all keeping well and will check in with you again soon to let you know how the birth goes.

Much love,

UND xxx

Offline netta

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Just doing a drive by to say hello, have been very busy but things slowing down now. I love and miss you all. I have my own website now for my art.  :-* I also am a blonde now Betty !!! lol will try to do a pic .
"to thine own self be true"

 


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