What do you want/need from treatment?

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What do you want/need from treatment?

Postby AnnaVer » Apr 02, 2009 3:37 am

What are important measures of improvement for you when started on a new medication? Below is a list of examples I have come up with, please just read them as examples and report what is important for you (ie does not have to be on list!) and a bit about your story if you think it would help explain!

Reduction in vomiting?
Cessation of vomiting?
Reduction in nausea?
Cessation of nausea?
Reduced salivation?
To be off IV fluids?
Able to stay out of hospital?
Reduce number of admissions?
Reduce length of stay in hospital?
Weight gain?
To be able to eat more?
To be able to drink more?
Able to care for kids without extra help?
Able to do housework?
To be able to go to work?
To feel better mentally?
Delivery at good birth weight (baby)?


NB. I am sure most would say all of the above, but please try and say realistically what improvement you would be happy with, as we are still to find a wonder cure and need to be able to assess the treatments we do have appropriately!

Why I am asking....
My name is Anna and I am a 4th year medical student at Brighton and Sussex Medical School in Brighton, England.

I am conducting a review of all well studies that have explored the use of steroids in the treatment of HG. Rather than decide myself (having no personal experience of HG) what would be meaningful measures of improvement while on medication, I thought it best to ask those with personal experience.

This help is most appreciated and will hopefully enable more appropriate measurement of treatment efficacy in this study and in those that follow = better treatments hopefully!

Thank you!
Anna
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Postby MichellevsHG » Apr 02, 2009 6:49 am

For me, I would say reduction of nausea/vomiting would be priority, followed by not needing further interventions (hospital, PICC, etc.), and then mental/family stability.

Obviously I would like all of them, but if I have to prioritize, it would be what I wrote above.

Anna, I hope your research helps! :hugs:
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Loss, 9/17/13 (11w6d), Aggressively treated severe HG from 5w - 5% weightloss in 6 days, IV protonix/fluids/zofran @ 8w; zofran pump, benedryl, phenergan, zantac, baby aspirin

Loss, 12/7/13 (4w5d)

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Postby eliana1300 » Apr 02, 2009 1:36 pm

I would say, first and foremost, stopping of the nausea, since that never stopped until I had the baby. Even a reduction would be helpful, and that all goes hand-in-hand with the vomiting (actually the vomiting wasn't too bad, considering). Anything after that, well, any of those choices would have been good. Staying out of the hospital, being able to eat or drink, and even do more housework would always be helpful and nice, but I think that I would have been able to do any of those would get done if the nausea and vomiting went away.
Eliana
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2nd pg = HG from 6 weeks up to 7 months--scheduled c-section
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Postby Schatje » Apr 02, 2009 4:37 pm

My top would be nausea. Vomiting is horrible, but wasn't every moment of every day. For me there are minutes during each day that I was not vomiting, but for me there were NEVER even seconds when I wasn't severely nauseas. I used to fantasize that I would stop being nauseous constantly and just be able to get nauseous for a few minutes before I vomited, vomit, and then be okay again for a while. Don't get me wrong I would have loved to not throw up either.

After nausea and vomiting I would choose feeling better mentally followed by being able to do the most basic things in life like taking care of my children, being able to resume normal grooming habits like showering and brushing my teeth, and the ability to lift my head without being incredibly dizzy.

Thank you for taking an interest and doing research in this area. The most basic of abilities and coping with daily life can seem so insurmountable when you have hg and those who haven’t experienced it have difficulty understanding how it affects every single aspect of a person‘s life. I hope you have great success.
~Heidi 2X HG survivor
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Postby *my3sons* » Apr 03, 2009 3:40 pm

My top would be to eliminate/reduce nausea because that would have taken care of several of the other issues you have listed. I had weeks of incessant vomiting but the nausea was debilitating, months and months long, and 24/7. So for me, I think the nausea did more damage.
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Postby Natalie » Apr 03, 2009 4:41 pm

Hi there.

For me, a reduction in my nausea would have been top of the list. It was 24/7 and for me, was so much worse than the vomiting. I am sure that even if my nausea could have been lessened a small amount, it would have made my pgys marginally more bearable. Nausea in my first pregnancy meant I could only lie one one side in my bed, in a darkened room with no lights, sound or movement. Even listening to the radio was unbearable and TV had too many flashing images and movements and increased my nausea.

At my worst, I didn't care for the baby or about its birth weight. I was only concerned with making it through the hours. Plus, the thought of the birth was too far off for me to even contemplate or it would have made me lower in mood.

In my second pgy, in addition to reducing nausea and vomiting I would dearly have loved to be able to look after my daughter but it was impossible and I sorely missed her. That would score pretty high for me but obviously only in my second pgy.

I would also add a reduction in sensitivity to movement would have made my pgys easier. Even the movement of my husband sitting on the bed next to me would set me off vomiting. My sense of smell was another thing that I would have loved being lessened as it would set me off vomiting. I can still smell Bold washing powder form 10 paces!!!

Finally, by reducing these of these things, maybe my isolation wouldn't have been so acute.

Ultimately as someone else said, if just one or two things could be more effectively controlled, it would have a positive knock on effect on many other areas you listed.

Also, please check your private messages!
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Postby carybear » Apr 03, 2009 4:57 pm

definately lessen the nausea, but without the overtired side effects of some medications. yeah I'd rather sleep through it anyway but, really, I've got 3 kids, I need to be a MOM not a blob on the couch.

The fact that the best working medications are so expensive is a huge thing for a lot of us.

smells are a huge thing for me too.

if I could get the nausea to go away then I could focus more on being the mom I want to be, and be more productive in my days. with the debilitating nausea even simple things take 3 times as long and often make it worse anyway.
Luvs to all,
CaryAnn
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Postby AnnaVer » Apr 12, 2009 5:34 am

Thanks so much for your replies! Those insights you have given me are very valuable and useful. If anyone else is able to contribute, even if it is saying the same thing as someone else please do!

Many thanks
Anna
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Postby JasmineHG » Apr 12, 2009 2:58 pm

nausea for sure!!!!!!!!!! it never really is the vomitting that got me so low...it was the extreme 24/7 nuasea!!! every day- every minute- every position. I have always said i would keep the vomitting if i could only get rid of the nausea. that is what makes life hell- inability to function or work and it sends you into a deep deep depression...kinda like a slow and deadly torture (not "kinda like"- it IS a slow torture)!!!
Severe HG survivor and major Colts fan!
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Postby KellyR » Apr 14, 2009 12:00 pm

Definitely lessening/eliminating the nausea. The vomiting I could deal with, but the nausea never, ever lets up for me unless I am not-pregnant. As the others said, many of the other issues would be resolved if my nausea were minimized!
Kelly

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DD - Daphne born 7/19/09 - HG entire pregnancy
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Postby aaronsmommy » Apr 14, 2009 5:00 pm

I guess I am with everyone else - I wanted the nausea to stop.

What I needed however was to stop vomiting and be able to eat and drink.

Ideally, a medication would do both, I didn't get either.

I do think that what may be important from the perspective of a doctor taking care of the patient might be different might be different that what is important from the patient's perspective - is that one of the things that you are looking at?

Here in the US we tend to use a lot of home health care, so it may be easier for us to stay out of the hospital. I was on TPN the whole pregnancy, almost all the time at home. I'm sure if I had been somewhere where that meant staying in the hospital the whole time I would have put "staying out of the hospital" as my number one priority - I hated it when I did have to be there.
Aimee

Aaron 12/4/02
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Postby SaraT » Apr 19, 2009 3:40 am

For me it would be cessation of vomiting and nausea as the main thing I would want, then help mentally. Oh and reduced salivation, definitely.

with those treated, I'd beable to eat and drink normally. when my anti-sickness tablets work - I'm on avomine - I can function but it doesnt last all day. doctor says I can take two a day but even with that I am still being sick in the evenings, when I get run down.

Another thing I would like to have help with that wasn't on the list is dealing with motion. not like traveling in cars or anything but little things like husband moving in bed or walking past when I have my head down, it makes me feel rather sick.

I wish you luck with your studies Anna :) I live in the UK and the hospital gave me the avomine, first they gave me cyclizine but my gp sent me straight to hospital the first time I was sick while taking them.
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Postby Cin » Apr 19, 2009 6:51 pm

Reduction or elimination of vomiting would be number one, followed by reduction of nausea -- because of course nausea can sometimes make it almost impossible to eat or drink.

Reducing my need for IV fluids would be third.

Anna, have you seen the work of Dr. Gideon Koren on this?

http://www.nvp-volumes.org/

I am so pleased to see a med student studying HG -- for many of us, our real problem is lack of knowledge or complete prejudice of doctors when it comes to an HG diagnosis. They don't know what to do, so they do very little or nothing, or recommend an unwanted abortion. This certainly is not everyone's experience, (and the MDs who are members of this forum or who work with the foundation certainly know the illness!) but enough of us deal with this that it is a real concern. Thank you so much for your work on this.
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Postby rjdecker » Apr 20, 2009 8:50 am

I would want the nausea to stop! Constant nausea and vomiting, mostly nausea, because the vomiting was more an after effect of the nausea at times. The nausea was so difficult to deal with, I hated food! I did not want anything to do with it. I hated that we had to eat to survive! And it gave me a distorted view on food, there are still some severe food aversions because of the memories the food brings.

Good luck with your research! It is so awesome that you are doing this! Let us know how it goes. I think all of us would be interested in seeing the results.
Jenny

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Postby thisisamy » May 08, 2009 2:19 pm

Thankyou so much for researching this condition - I wish you great success. Even by doing the research you are giving hope that one day others will not have to suffer as we have. I would be very interested in your findings and hope that more recognition and support is given to sufferers of HG in the UK.

Nausea -
Like many others I agree that stopping nausea would have been top of my list of needs. I felt it 24/7 and couldn't sleep properly for months. I was completely exhausted and, after a few weeks, was unable to function even basically.

Only anti-emetics administered intra-muscularly, which was only done when I was admitted to hospital, gave me relief. Getting admitted was a horrendously difficult process. Following IV fluids I found I could then eat and drink again which made me feel better quite quickly. However, 24 - 48 hrs following discharge I was back to square one and back in hospital again within the week - most likely because the oral anti-emetics were not getting the chance to be absorbed before I was vomiting again.

The nausea becomes a downward spiral as you can't eat or drink (you bring up what you try to) and you feel so terribly weak. After a couple of weeks, I couldn't care for myself, wash or brush my teeth/hair. I felt like I wanted to die some days.

I couldn't stand either extreme of light or dark and although TV was an absolute no no, I could listen to some radio for a few weeks. When it got really bad even radio irritated and confused me. I could not function and had months off work. I found that very depressing. Luckily I didn't suffer financially but there will be many women who would, which further contributes to the stress.

If you can break the nausea, you can probably resolve many of the 'quality of life' complaints/symptoms. I think although emotionally horrendous, nausea is possibly less physically evident and impactive than vomiting.

Vomiting -
I actually felt some "relief" when I was sick. It was as if I got some kind of rush afterwards and that gave me 5 mins or so of "better time" when I would try and wash etc before the nausea would flood over me again.

Breaking the cycle of incessant vomiting would be the 2nd priority for me, although I imagine, vomiting is possibly clinically more concerning it is has a more physical effect. My weight dropped drastically. My ketone levels were through the roof. Possibly most concerning was my liver function tests gave cause for concern to the extent I am still having my levels of various LFT’s monitored. No-one has confirmed, but I suspect I suffered lasting damage to my liver when I had HG. There are no other apparent explanations.

Consequences -
Having been through HG before (extreme for two thirds of my pregnancy), I was unable to cope with it and care for my baby when it happened again. I was told it was rare to happen again but a few years later a 3rd time with HG was also too much. The 1st time you believe staff when they say it will get better and I cannot describe how desperate you feel when it actually gets worse. Looking back I was depressed and almost suicidal. I hated being pregnant and hated the "thing" inside me that was making me feel so wretched. That invoked massive guilt and self loathing. I would have agreed to anything to make it stop.

I felt enormously isolated with a complete lack of support and understanding or even sympathy from over stretched hospital staff with no resources to deal with women other than those about to give birth..

I understand there are sliding scales of suffering and the assumption by both people outwith and within the medical profession of HG being a bad case of morning sickness belittles the devastating impact this condition can have not just physically but emotionally, and certainly did have in my cases (x3).

Remedies/Medicines tried –
As an aside, I did try all the herbal and homeopathic remedies for nausea and sickness– nothing worked at all, not even slightly! The only drugs prescribed to me for use at home the first time (in 2005) were either Cyclizine or Stemetil in tablet form. The 3rd time a suppository was also prescribed – Motilium. None of these drugs gave me relief. I couldn’t get IV fluids or injected medicines at home, which were the only way I found relief. If this was allowed it would have been less of a drain on hospital beds and resources and better for me emotionally.

Conclusion –
Personally, although I would dearly love to have a sibling for my 3 yr old daughter, having had HG 3 times with very negative experiences in terms of care and relief, I couldn’t do it again, even thought I know the joy of motherhood is so precious.
Amy
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Postby Corrine » May 08, 2009 3:52 pm

I found the vomiting annoying but hands down the constant torture of severe nausea was what floored me. I couldn't care less about the weight gain or food intake or the rest of your list. It was all about the nausea for me. It's completely debilitating. And no doctor can truly appreciate it because they aren't feeling it. However if you puke all over them then it gets their attention. It's like they don't believe you unless there are external signs.
Neil -9, Ian -5, ^Linnea^ (Oct 22-Dec 17, 2008 HLHS), Rainne - 1 and expecting #5 Jan 2012

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Postby Maria'sMommy » May 17, 2009 12:00 pm

Reduction, or better yet elimination, of nausea would have been the most helpful thing. If I could have felt less nauseas all the other symptoms would have been so much more bearable. The constant nausea was completely unbearable.

Around week 16 in my first pregnancy, when the nausea had eased considerably, I would have long periods when I didn't feel nauseas, but I would instead just vomit with no warning. Sounds terrible, but it was really no big deal. Just a minute of discomfort and then I was back to normal. However, the 24/7 nausea made me want to die. In my second pregnancy (which was much worse) I even asked my midwife to put me in a coma until my due date.

After reduction of nausea it would have been nice to have more energy. I would really have appreciated being able to be in any non-horizontal position. It would have been nice to be able to stand up without shaking from exhaustion. However, given the choice I will always choose horizontal and not nauseas over the alternative.

Thank you so much for choosing to study this terrible disease. I sincerely hope my daughters never get HG. However, if they do my next hope is that some type of effective treatment is available to them.
DD 2006 - NVP
DD 2008 - mild/mod HG
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Postby Karel » May 29, 2009 3:40 pm

For me, the most important things are reduction in nausea. The constant, severe 24/7 nausea until delivery is horrible and I wouldn't wish it on anyone.

I'd love to be able to care for and play with my 2 year old, but I can't. I'm just too sick. Her running around and jumping make me nauseated.

If the nausea could be controlled or greatly reduced, eating and drinking and energy would follow. With my daughter, I was pushing and puking during delivery. The OB that delivered her (not my usual OB) had never seen anything like it before. The moment the placenta was delivered, the nausea went away and I was starving.

When the nausea let up at 17 weeks with my first pg, I was able to start eating and had more energy. It's the severe, debilitating, all day, all night, no relief nausea that is the worst.
Eva 9.20.06-Moderate HG from 6 weeks to birth at 40 weeks 5 days (Zofran, Unisom/B6)
M/C 11.17.08-NVP lost at 9 weeks
M/C 3.4.09-NVP lost at 4.5 weeks
Kiera 12.05.09-Severe HG from 4-20 weeks and 30 weeks-birth at 40 weeks and 3 days (Zofran, Tigan)
Baby #3 due 01.30.12-HG starting at 5 weeks (Zofran, Unisom, B6, and IV LR for 6 weeks)
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Postby screamin' » Jun 04, 2009 12:02 am

nausea reduction/elimination
this would by itself greatly reduce or stop vomiting don't you think
it would lead to all the other positive outcomes you have listed there.
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Postby kirstyx » Feb 24, 2010 9:18 am

Hiya and thank you so much for researching into this xx

Top of my list would be

1 vomiting
2 nausea
3 hospita
4 mental health
5 tiredness

I had server HG with my daughter frm 7 wks until 5 months and then mild HG until birth still to this day i can't eat chicken.

I lost 3 1/2 stone and was in hospital most of the 5 months if not in for 4 days in for sickness jabs as i got futher through my pregnacy.

I never imagined that a woman could be that ill due to a tiny baby but i was so ill i couldn't eat drink or wash my self.

My mum suffered with her 1st,3rd and 4th which were all girls so it may have a pattern.

I would be happy to help in anyway i can as it has hit me hard and am now 7 wks into my 2nd pregnacy and HG is back but not at its worse yet.

PM me if you would like my email x

I nearly died last time and i think more research and awearness is deffinatly needed xxx
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