POZ Community Forums
Main Forums => Positive Women => Topic started by: whoknew on September 23, 2010, 07:58:04 am
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well hello again lovely ladies. I hope you are all well.
some of you may remember some of my posts from before some may now I am 29 and poz for 3 years ( diagnosed) I am mum of a nearly 6 year old and a nearly3 year old :)
well I have just found out I am pregnant again !! complete shock this time, last time we planned our baby and concieved stright away, this time we were activly trying not to and using condoms. We didnt forget to use one nor did one split but it just did not work !!
Ordinarily I would be jumping for joy despite this complicated issues that come with being pregnant and poz but THIS time I am on and have been on Atripla for a while ??? ??? ??? now I know that they advise NOT to get pregnant because of birth defects. I am terrified to tell my drs and I do not want to have an abortion.
have any of you been in this situation and the baby been ok ? the drs said before in a passing conversation that if that did happen then they do not take the woman off the meds as it is in the first 4 weeks of pregnancy that the problems can occur and therefor the damage would have been done before I even did a pregnancy test.
I feel so so stupid I should have used 2 forms of contraception but the hormonal ones make me ill and to be honest we managed for 3 years with just condoms so I didnt think there would be a problem.
any advice or reasurance would be greatly apreciated.
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I'll let other, more well informed members, tackle the meds question, but I will comment on your wishing you'd used two forms of contraception. Go easier on yourself! Hormonal birth control is definitely not for everyone, and good for you for listening to your body versus just trying to power through it. Condoms are very effective, and you and your partner were being responsible. You didn't do anything wrong, you did everything right.
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I have calmed down a bit now :) I rang my Consultant and my lovely specialist nurse who I have know since diagnosis rang me back and told me not to worry so much. Yes its NOT advised but its also more than likely all ok. She is going to talk to two of the drs who specialise in pregnant people with HIV and let them discuss if I need to change meds now or not. Im definatly not the first ( accidents happen) and I will not be the last.
Aparently I am the third lady in two month to have rung up because she has fallen pregnant on atripla !
feel sick , tired and hormonal must be coz im having a baby !!
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Congratulations, Who!
I did some poking around on Google and found a recent meta-analysis of studies looking at women who fell pregnant while on Sustiva. (that's the problematic med in Atripla)
Large Meta-analysis Finds No Link between Efavirenz (Sustiva) and Birth Defects (http://www.hivandhepatitis.com/recent/2010/0615_2010_b.html)
Good news, eh?
I also found another, older article which contained the following information that you may wish to pass on to your doctor:
Antiretroviral Pregnancy Registry: To monitor fetal outcomes of pregnant women exposed to SUSTIVA, an Antiretroviral Pregnancy Registry has been established. Physicians are encouraged to register patients by calling (800) 258-4263.
Please refer to the accompanying Important Information about SUSTIVA and the enclosed SUSTIVA Full Prescribing Information.
If you have any questions about this new information or require additional medical information, please contact the Virology Medical Services Department at Bristol-Myers Squibb Company at 1-800-426-7644 (select Option 3).
I don't know if they are still collecting information as the article is more than five years old, but if they are, giving them your info may help other women.
Good luck and keep us posted!
Ann
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thanks for the info :) I am in the UK and there is a registry. Infact they took details of both my prev pregnancies , what medication cd4 levels etc the aim is to keep an eye on the statistics of transmission ( almost non existent ) and to provide info about all babies born to poz mothers.
This information is updated as the child grows up at various intervals although the child is kept anonomous.
Feeling alot of morning sickness today and very hormonal so guess all is going well so far.
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Just to clarify the info is not about the child ie who they are and the fact that thier parent is positive it is more a way to monitor side effects of the 4/6 week medication course.
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Ah, I didn't realise you were in the UK. So am I - sorta. I live in the Isle of Man. (originally from the States, been here 20 years) I go to Liverpool for my hiv care.
I was pretty impressed by how things like this are (anonymously) monitored here. When I had a bad reaction to the hep B vaccine a few years ago, it was all ceremoniously logged and recorded and sent off to not only the pharmaceutical company, but also NICE and some other government authority. And there's a big red note on the front of my file warning about my adverse reaction to the vaccine. I can't tell you how much I value the NHS after living in the States and struggling with health insurance.
I hope the morning sickness settles down for you soon. I didn't really get much of that during my pregnancy but I did have problems with migraines.
When are you due? Keep us posted!
Hugs,
Ann
xxx
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I forgot to congratulate you in my first post, so I will do it now; CONGRATULATIONS!! I will send you and baby good thoughts for the morning sickness to abate!
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Hi everyone.
I am officially 7 weeks pregnant I had an early scan yesterday to confirm dates and all looks ok so far. Still feel constantly sick but otherwise I am doing ok.
My consultants have recomended I do remain on atripla for the duration of the pregnancy as the exposure and risk for neural tube defects has already happened... it "should" be ok. I am not particulary worried well no more so than I would have been had I not been poz and pregnant. :)
Thankyou for the messages
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Congratulations Whoknew!!! That new study should definitely put your mind at ease.
I switched my meds when I started trying to conceive, but my doc told me at the time that she had known of many women who stayed on Atripla during their entire pregnancy and had completely healthy babies. I switched from Isentress/Truvada, a combo I loved, to Combivir, Norvir, and Reyataz, which I don't like nearly as much, but which have been around for many, many years with no problems for pregnant women. My doc's personal opinion is that most HIV drugs are fine for pregnancy, but she can only give a "guarantee" for certain combos. She still takes the ultra cautious approach and won't even put women who are of childbearing age on Atripla.
Finally, I have to say this for the ladies who are trying to avoid pregnancy...condoms are pretty effective, but they need to be used during ALL stages of sexual activity, including foreplay. The preejaculate can get you pregnant too if you are at the most fertile stage of your cycle. Hormonal birth control has it's own problems too, so even that is not foolproof. There have even been women who get pregnant after getting their tubes tied. All of this to say...no method of birth control is 100%, except abstinence, so no one should beat themselves up over an "oops".
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Little update.
I have now had a proper ultrasound and all looks well. No probelms detected and baby is doing fine :)
I dont like my midwife since she has little to no knowledge about the current guidelines for caring for hiv positive mothers :( I spent my first apointment educating her to the progress in medication.
No I am not sick , No I do not have a very very low immune system ( cd4 currently 546 ! VL undetectable ) no I need take no extra precautions around my children :( no my lifespan is not dramatically reduced. Yes of course I worry about dying young and leaving my children motherless :( but only as much as any other mother.
NOOOOO I do not have to have a cesarian to stop transmission not will I have to have IV azt.... and many many other things like that !
other than that im good :)
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those were all actual comments or questions she asked ! I really shouldnt have to educate the medical proffession. She also wanted to delve into why I have hiv and even asked me what "high risk" behaviour I was into :( .... well if she must know none actually other than sex with my adoring husband who unfortunatly hadnt taken a hiv test before we got together. I asked her if she had children of her own ( she does) well then I replied you have obviously engaged in the exact same kind of "at risk" behaviour as I did then.
she commented how surprised she was that I looked normal , and even asked what extra precautions were needed to take my blood she wouldnt write me a blood test form for the ordinary department at the hospital and insisted I went to my ID dr to get my pregnancy blood tests done :(
ok rant over... im usually prepared for ignorance but coming from someone like this it was doubly insulting. I obviously made her feel unconfortable I dont fit in any of her preconcieved ideas of what a positive woman should look like.
I think I will look for another midwife
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Good lord, I think I would look for a new midwife as well. All those comments she made mind boggling but not suprising since I heard a lot of the same things when I was pregnant in 98. I was lucky enough to find a study to be involved in that was tracking women and infant transmission.
What meds did they end up switching you to?
Good Luck with everything!!!
Snow
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DEFINITELY look for a new midwife! Ask at your hiv clinic to see if they have any recommendations. Chances are they do.
There is absolutely no excuse in this day and age for a midwife to be so ignorant surrounding hiv. I'd be reporting her ass and her department in general. They need an intensive hiv awareness training course YESTERDAY!
I'm glad to hear everything is going well with the baby. Keep up the good work!
Hugs,
Ann
xxx
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What concerns me is the effect this kind of attitude would have on someone diagnosed in pregnancy who will have thier own preconcieved ideas and really need to have a midwife who knows the facts. At least for me I knew enough to correct her. I contacted my clinic who are going to make a complaint and try and schedual some further training and support.
They have not switched my medication , basically since the "damage" that "could" be caused would have happened before I knew I was pregnant they saw no need to switch by the time the sustiva componant got out of my system the first trimester would already be over. The recomendation was to stay on the medication that I was responding well to. The statistics are not that much higher and although NOT recomended for pregnancy once fallen pregnant its kinda well too late really.
Changing medication now would have no particular benefit to me or the baby. so we are crossing fingers that nothing is wrong.... so far all looks great xx
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I'm so happy to hear that you spoke to your clinic about this midwife and they are now taking steps to insure her and her department are brought up to speed on hiv. I agree, it would frighten the daylights out of any woman who is diagnosed during pregnancy to be confronted with such ignorance and misinformation. Good for you for doing something about it.
And it sounds like you were pretty calm during your talk with her. I'm afraid that if a midwife said something to me like "I'm surprised you look normal" I would have asked her if she thought I'd have two heads or what. I don't have a lot of patience with health care providers who show such an astounding level of ignorance. It's just not acceptable in 2010, especially in her field where a fair amount of women who didn't know they were poz are diagnosed. Kudos to you - I would have went ballistic! ;D
When you spoke to your clinic about her, did they have any suggestions as to where else you could go? I sure hope so. You and your baby deserve the best care available. As does everyone.
From the study I linked you to a few weeks ago, it doesn't look like you'll have anything to worry about regarding the Sustiva. I'm not surprised they didn't switch you for that reason as well as the thing about it being too late anyway.
I hope your nausea has abated. You didn't mention it this time, so I hope that no news on that front is good news! Keep us posted.
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aha yes the sicknes has passed :)That is also one of the other reasons I don't want to switch meds, I am scared of the other side effects. Having said that I am not sure if the sustiva component of the Atripla is messing with my head a bit at the moment combined with the hormones and normal pregnancy moodswings Im feeling a bit up and down ( very much more so that last pregnancy)
But that could be because I am running around after my other children and barely get five mins peace. I am switching to another midwife at the surgery who has actually met a HIV positive person before. I have also written a letter of complaint to the midwifes boss. I accept the fact that she was not intentionally trying to offend me but none the less that kind of questioning needs adressing.
I often find being positive seems to open you up for the most personal questions ever thought up. !! I may have to start thinking up snap responses designed to SHOCK them lol.
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I often find being positive seems to open you up for the most personal questions ever thought up. !! I may have to start thinking up snap responses designed to SHOCK them lol.
You're not kidding. I've been known to respond to the "how did you..." question with a question of my own - "did you use condoms with every single person you've ever slept with?" When they either say "no, don't need to" (or whatever excuse) or just look incredulous, I say, "well, neither did I and that's how I got it. You might want to go get tested yourself." That usually shuts them up. And yes, most straight people I've said this to have answered "no", so it does shock them a bit and gets them thinking about their own behaviour instead of mine.
Glad to hear you're feeling better nausea-wise. Hope the mood swings settle down for you, but don't be too hard on yourself about them either. It sounds like you've got a lot on your plate. See if you can't get a friend or family member to give you at least a few hours every week where you only have to worry about yourself and that baby you're growing. You deserve some "me" time so make sure you get it!
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further hurtful comments....... The midwife asked me at the last appointment "what about your children , how does that work" I smiled politley and explained they are both negative and that the one I am carrying will be too and then we moved on to other stuff.
I found out from my nurse practitioner at the ID drs office the other day that the midwife had called her and asked specificaly what risk I pose to my children :( :( as in "how is it possible for them to live with two parents who have AIDS " she wanted to know how my children are being monitored , if they have child protection social workers and how often they are being tested for infection :( :(
I cried my eyes out when I heard this. All I ever do is try to be a good mum. HIV should not stop that, I am a good person as we all are ! HIV should not define everything I do. My biggest fear at diagnosis was that one day someone will look at my situation see I have hiv and say nope she doesnt deserve her children. This is a myth that was quickly dispelled and I was assured my parenting and my hiv status are nothing to do with eachother. There have never been any concerns about my childrens welfare. The midwife has even suggested that she may refer me to social workers :( she was told that if she continued down this path with no further reason than my HIV status that she could expect a hefty discrimination lawsuit and procecuting under the disability discrimination act.
I get that I dont fit into her neat little box of what someone with HIV is, and yes I probably make her unconfortable she has comented repeatedly that I dont look like someone with AIDS, she was entirely surprised that I was married leading to very intrusive questions about the state of my relationship and sex life. I will not be seeing her again, she is clearly unconfortable treating me and has no clue about HIV. I have tried to educate her as much as possible but to be honest I dont like being treated like this. I am not an encyclopedia of medical knowledge I am a mum who is pregnant and needing the general support of the medical practitioners involved. Most things I can take but bringing my children into it is unacceptable. I feel like screaming at her... NO I CAN NOT TRANSMIT HIV TO MY CHILDREN BY SHARING CUPS CUTLERY ETC. No they are not at risk from me, I am NOT secrety shooting up drugs ( nor have I ever taken an illegal substance not that I am judging anyone who has )If my children cut themselves I like every other parent will clean them up.
She thinks it is and I quote absurd that my extended family do not know my status... ie my mum and sisters she actually thinks they have a right to know since they have close contact with my family :( seriously this woman is unreal. Luckily my drs are on the case and have contacted her direct to bring her into the clinic for a "chat" transmission risks hasve been explained and her worrys about taking extra precautions when examining me have been dispelled I hope.
I still dont want to see her, I want to go into the midwife if I am concerned about my babys welfare , thats her job... sorry for the rant needed to get it off my chest
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Also and this is quite worrying I have a friend who is also pregnant she is with the same midwife, when they got to the discussion about hiv testing in pregnancy she was merely handed a leaflet and told oh I wouldnt worry about that you are not "high" risk!!!! so my friend has not had the test ! Midwifes should be encouraging this test, they should be championing the medication and explaining how much safer it is for the baby if the parents know. My nirse during thier discussion asked her how many women she treats that have never had the test and she said it was up to them to test.... so saying that then how many hiv positive women does this midwife treat without the women ever knowing her status and therefor protecting thier baby and thier health.
This midwife has 3 children of her own so unless she has yearly hiv tests she has put her self at the same amount of risk by having unprotected sex as we all have !!
hiv does not descriminate... it is a shame that others do.
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That's terrible >:( what a stupid woman!!! I hope you can manage to get it sorted, it's such a shame that you should be enjoying your pregnancy and you're not. I was fortunate during mine that I didn't encounter anything like that - my community midwife wasn't a specialist but she treated me totally the same, to be honest I was shocked at how un-bothered she was. I remember she took a urine sample from me once and didn't even put gloves on when she dipped in ( not that this is a risk anyway regarding hiv but I thought she might freak out or something).
Do you know the sex yet, or are you not finding out? I hope you can enjoy the rest of your pregnancy without narrow minded idiots spoiling it. Rise above her if you can - you've done and are doing nothing wrong by having a baby.
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I can't believe that woman is still employed by the NHS. It's starting to sound as though she is wilfully ignoring the science behind hiv.
And the fact that she's not testing all the women in her care is nothing short of outrageous. I'm pretty sure the NHS adopted an "opt-out" policy regarding hiv testing during pregnancy a few years ago. This means that a woman would be informed that one of the routine tests is an hiv test and the woman has to expressly say "no, don't test me for that". In other words, it's not up to the midwife, it's up to the woman. I know they do that here on the Isle of Man.
Saying that, we have a nursing college here and a few years ago I took an hiv awareness course there. On several occasions I ended up correcting the instructor and providing her with up-to-date information. One of the lectures was given by the OB-GYN who is the clinical director of our maternity unit. He was also woefully out-of-date. As he is the doctor I have seen (and still occasionally see) for problems such as endometriosis, I have a good relationship with him so I was able to put him right as well without putting his nose out of joint. I last saw him nearly three years ago (about three years after the hiv course) and he told me that our discussion that day lead him to realise that he needed to keep himself up-to-date on maternal hiv issues and thanked me for that. He also told me that he had instituted the "opt-out" testing, also as a result of our discussion during the course. So yes, we can make a difference by speaking up.
You know, this has me wondering what they're currently doing about hiv awareness courses at the nursing college. The woman who used to teach the course had cancer and passed away a few months after the course I took finished. I'm not sure if they still offer the course because at that time, they had no plans to have someone else take over (the instructor told me this - she was not happy about it and yes, she knew she was dying). I really should look into that and make a fuss if they don't.
whoknew, I really hope something concrete is done about this midwife. And by that I mean more than having her come to the hiv clinic for a chat about transmission. I hope they monitor her for at least six months to a year to make sure she is getting as many women tested as possible and that she is not treating any other poz women the way she has treated you. I'm quite sure you cannot possibly be the ONLY poz woman she has had under her care. And like you, I wonder how many women she has treated who were poz but didn't know because she didn't encourage testing.
she was told that if she continued down this path with no further reason than my HIV status that she could expect a hefty discrimination lawsuit and procecuting under the disability discrimination act.
I wouldn't be surprised if you already have grounds for a discrimination lawsuit. I realise that you probably already have enough on your plate with your children and the pregnancy, but if you have the time and energy, look into this. I'm not sure where you are in the UK, but an ASO such as THT (nationwide) or if you're in the Northwest, Sahir House in Liverpool or GHT in Manchester may be able to provide you with free legal advice. You could end up with a nice little nest egg, something that may come in handy in future, what with the way they're allowing uni fees to skyrocket out of the reach of many families (for example). Feel free to PM me if you want to discuss this further. Maybe I could do some of the legwork for you as I have the time and the inclination.
sorry for the rant needed to get it off my chest
Good lord woman, rant away! I don't know how you're not going absolutely ballistic. I know my temper would be getting the better of me where this midwife is concerned. There's absolutely no excuse for her behaviour and ignorance.
Again, don't hesitate to pm me or email me at (remove the spaces etc) d a s h 1 2 9 3 at g m a i l dot c o m if I can help in any way.
Hugs,
Ann
xxx
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Thankyou so much for your replies :) makes me feel better to know Im not the only one out there !
I have a meeting with the practice manager at the surgery next week and I am going to speak to THT about the way I have been treated. At the end of the day if this was someone at a workplace the DDA would have ALOT to say about the matter. I am being made to feel like a bad person, bad parent and all round bad egg just because of someone ignorance.
Had to chuckly about the urine sample... my midwife not only wore gloves but refused to dispose of the irine in the normal manner ( ie down the sink) instead she handed it back to me and said " I guess YOU will know what to do with that ".
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Had to chuckly about the urine sample... my midwife not only wore gloves but refused to dispose of the irine in the normal manner ( ie down the sink) instead she handed it back to me and said " I guess YOU will know what to do with that ".
How on earth did you manage to refrain from dumping it over her head? ;D
When you think about it, she IS in a workplace and I'm sure the DDA would be interested. After all, it's not like she committed one small gaff, she's repeatedly shown astounding ignorance and, let's face it, arrogance.
Good for you for pursuing this matter. If there's anything I can do, even if it's only to offer moral support, you have my contact details. Don't hesitate to use them.
Hugs,
Ann
xxx