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Author Topic: update from me.  (Read 10579 times)

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Offline whoknew

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  • Posts: 49
update from me.
« on: April 04, 2011, 07:54:28 AM »
Hi Ladies,

Just a little update from me because its been a long time since I logged on .

I am only a couple of weeks from having my baby now :) ( 3rd child, 2nd since diagnosed) still having a few issues with my maternity treatment. I am having a cesarian for other reasons and the hospital are insisting I have the azt drip during this procedure even though the national guidelines state that if I am undetectable( which I am)  I do not have to have it. The guidelines changed 3 years ago but they have not been updated at the hospital I am due to give birth and my consultant OBGYN still believes it is necessary :(

So I will be having medicine that will make me feel ill , that I dont need and that is unnecesary just to make them feel better... I can refuse it but have to sign to say I am refusing potentially life saving treatment for my child :( so unfair. I dread to think the response that I would have got had I wished to give birth naturally, which for hiv positive people is a real choice now but still not supported 100% at the hospital here.

I am aparently such an oddity that the last person to give birth hiv positive at this hospital ( which is actually quite big) was me nearly 4 years ago with my second child. HOWEVER there are now 6 women all due within a month of myself so maybe the hospital will get better at dealing with this.

anyway not long and I will be holding my healthy gorgeous little baby in my arms and it will all be worth it. , wish me luck xx

Offline whoknew

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Re: update from me.
« Reply #1 on: April 04, 2011, 07:57:10 AM »
Just wanted to add that this behaviour is not typical of all hospitals or midwifes, the majority of people I have come across in my pregnancys have been supportive and not really fussed about the hiv. Its just this time I happen to have come across some unfortunate hurdles.

Bigger hospitals in more densly populated areas have much better individual care :) dont anyone be scared off by some of the behaviour of my medical staff.....95% of them are great  xx

Offline Sweet_C

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Re: update from me.
« Reply #2 on: April 04, 2011, 09:54:19 AM »
I hope you have a smooth and uncomplicated labor and delivery!!  Sorry your doctors aren't up on the latest on HIV.  The latest on HIV changes so quickly, and it seems that many doctors are about 5-10 years behind if they don't deal with it regularly.  I was watching a documentary on an HIV positive mom a few months ago, and the doctor that delivered her stated that all HIV positive moms should give birth by cesearean.  I was shocked because the show was made in 2010 and it's been common knowledge that if your viral load is low enough, it is  definitely an option and actually preferable to give birth vaginally if possible. 

I gave birth about 6 weeks ago, and I hated feeling like an oddity.  The staff was very courteous to me, but I could tell they had never dealt with anything HIV related before. In my city, there is a hospital that gets more HIV positive moms, but it is a public hospital with low funding and not a pleasant environment at all.  So I chose the nicer one, but I felt that I was the one telling them what needed to be done.  They got the big things right, like the AZT for my vaginal delivery and AZT for the baby after birth, but everything else they didn't know.  For the next baby, I will at least know what to expect!  I still think it was worth it to go to the nicer hospital.  I totally agree that most healthcare workers are very professional and being one of only a few HIV+ moms wouldn't stop me from experiencing it again.

Anyway, keep us posted on the birth of your little one! Do you know if you're having a girl or boy?
Tested positive on September 11, 2008

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: update from me.
« Reply #3 on: April 04, 2011, 02:48:57 PM »
Geeze Who, they're still putting you through it, aren't they. Can you not get a letter or something from your hiv doctor telling them about the guideline change? That's what I'd try to do.

Anyway, good luck with the delivery. I can't wait to hear about your new little bundle of joy! Please keep us posted - and Happy Belated Mothering Sunday! I hope your family spoiled you rotten. :)

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Offline whoknew

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  • Posts: 49
Re: update from me.
« Reply #4 on: April 05, 2011, 11:01:15 AM »
thanks ladies.:)

Its been a weird old ride this time, I hate having to educate medical proffesionals, I just want to be treated like any other mum on the labour ward... with dignity and respect and personal care. I feel I miss out on the excitement that other new mums get on maternity wards and hate the pitying looks and the constant comments and questions about how I got hiv.

I have also specified that this time I do not wish to have tons of students come to talk to me, I really would just like to bond with my baby.

deep breath , it will all be worth it and soon as we are out of the hospital it will  all be but a distant memory :)

Offline whoknew

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  • Posts: 49
Re: update from me.
« Reply #5 on: April 08, 2011, 02:09:30 PM »
The pregnacy specialist hiv dr has today  written a letter stating in no uncertain terms that I am NOT to have the azt drip because my viral load is consistently undetectable,also restating that my reason for the cesarian is due to other factors. They are providing the hospital with the up to date policy.

She is also putting in a complaint about the generalisation of care :) I am feeling happy now. Its not that I minded it was just that it really is unnecesary and I resented the fact I was being given something that was of no benefit to myself of my child.

Just to clarify that if someone has a detectable viral load , or hasn't had a recent viral load done the AZT drip is of course still given same with the cesarian. The confusion with me came ( aparently) because I am having a section and they are assuming it is because I have hiv. If I had been having a natural birth this wouldn't have been an issue.

So if I turn up on the day and get forced to have it, or made to feel bad for refusing I have every right to complain to the highest level. ::)

Offline Sweet_C

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  • Posts: 197
Re: update from me.
« Reply #6 on: April 08, 2011, 07:13:46 PM »
I'm glad you go that worked out.  Good for you for standing up for you and your baby!
Tested positive on September 11, 2008

Offline karry

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  • Posts: 340
Re: update from me.
« Reply #7 on: April 26, 2011, 03:27:02 PM »
Hi ladies,
Thanks for sharing this information. I must admit I was in the dark about this and also believed as a pos person I can only have a baby by ceasarian. I am not expecting yet, but have finally reached the point in my life where I intend to start trying to make a baby.

Could you be kind enough to provide me with a link to these new guidelines? I scar awefully and if I can have a safe delivery without ceasarian, I want to know more about it!!!

Whoknew, have you had the baby yet? How are you doing?
All the best!
Take it a day at a time....and be positive about it too!

Offline Sweet_C

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  • Posts: 197
Re: update from me.
« Reply #8 on: April 28, 2011, 09:22:24 AM »
If your viral load is 1000 or less, then you have the option of a vaginal or C-section.  http://www.uptodate.com/contents/patient-information-hiv-and-pregnancy

Also, here's a good article on rates of mother to child transmission.  http://www.natap.org/2008/HIV/050708_01.htm  In this study, out of over 2000 Mothers who were undetectable at birth, only 0.1% (3 mothers) transmitted HIV to their babies regardless of whether the delivery was vaginal or cesarean. 

When it comes to preventing mother-to-child transmission, studies strongly suggest that getting undetectable as early as possible, well before the time of conception if possible, is the key.  Out of the 0.1% of babies who were infected by undetectable mothers, two were confirmed to have been infected at the time of conception having been born to moms who had a high viral load at that time.   It has been speculated that the third baby was actually infected at conception as well, but that the prophylactic drugs might have the effect of masking the effect of HIV infection for a short period of time, causing doctors to mistakenly conclude that the child was infected at delivery.

The only downside to starting treatment early is the potential for long term effects to the baby and mother.  There had been studies suggesting that the drugs could cause harmful effects down the road to mother and baby, but recently those studies have been debunked.
So if you're planning to have a baby, you might want to consider starting treatment right now if you haven't already.
Tested positive on September 11, 2008

Offline karry

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  • Posts: 340
Re: update from me.
« Reply #9 on: April 28, 2011, 06:55:22 PM »
Thanks a lot Sweet C.
I do appreciate the information.
Take it a day at a time....and be positive about it too!


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