i have my medical records from my 1st hg pg...not accurate

[halgal427]

i just wanted to share with you all some interesting info on what i found to be false information in my medical records. i had hg in the spring of 1999. this was my secong pg but 1st hg pg. i always thought that my dr did the best she could at the time but i now know that this is not true. she made my hg seem like no big deal in my medical records. she even neglected to record the 20+ times that keytones were found in my urine. she also recorded that the meds that i tried (phenagren, reglan, tigan) seemed to help. thats just not true! i ended up taking only a few doses and going through the rest of the pg with no medication. she wrote in my charts that because i had some extra pounds on that the weight loss was still acceptable. i am 4'11" and lost 18 lbs.(that is a lot for my stature) i didn't have THAT much extra weight and when i delivered i was very underweight. i did have a midline put in and recieved home health care for fluid 3/day. she wrote that i was doing well with the fluid and nothing could be further from the truth. all was well if you call vomiting 20+ times a day well. the IV fluid made me vomit even more everytime i recieved a bag of fluid. i think that was because it was so late in the game when i started the fluid that my body rejected it no matter how it came into my body. it did keep me alive. it saved my gallbladder but i was in the pits of hell and she wrote that all was well! i had starvation pains in my stomach that was unbearable. i wished i was dead and i wias bar ely alive. i am SO mad that this is how my OB treated me. she wasn't concerned at all about the emotional part of hg at all. i have to say i am SHOCKED!

i didn't know about this site (or the delphi forums site) way back then, i wish i did. i was never told about b6 or zofran. i was left to suffer silently (as most of us are) yet even after discovering this site i still felt like my OB tried her best. it wasn't until i moved and had my medical records sent to my house so i could give them to my new dr. that i realized just how mismanaged my hg pg was. unfortunately i know hg is often mismanaged.

i am not a confrontational person, which is no help when you have hg, since YOU are you best and only advocate. when i'm out to eat, i have my dh ask the waitress for more water for me. i quess i am sort of shy too. it makes asking for anything hard for me. i have found that when it comes to most things in life, if you don't ask you won't get it. i am getting better but even with my 2nd HG pg (3rd pg total) i only asked for zofran and not fluid to help it work when i was dehydrated. i didn't ask for much help from family and friends to care for my 2 kids either. it was still a miserable hg pg.

so my warning here to all of you is to be your own advocate. not just with hg but with every aspect of your medical care. if you need your partner to advocate for you...like i do....you need to tell them to. if you start w/ a dr. you thought would be good but has turned out to not to be what you thought, CHANGE DRS! you are more improtant then what that dr will think.

my wish is that all drs would be more informed about how to treat hg so we could all recieve the care we diserve. the wish for no more hg won't ever happen but the wish for OBs to know how to properly treat hg is something that could really happen one day. it would save so many lives.

i am currenly 5 weeks pg and feeling good still. i am getting ready for the worst. i have already asked my new OB about steroids, fluid, zofran. i am trying best to be proactive and i hope when push comes to shove i can ask agian. i hope all of you find what you need to make it through hg. may hg have mercy on us all.
take care,

[emily]

THANK YOU for posting this! I got into a little spat on someone else's thread, which I didn't mean to do at all, but this was my point I was trying to make.

YOU ARE YOUR OWN BEST ADVOCATE!

I almost died from mismanaged HG and there are people who have died from mismanaged HG. Some doctors will simply let you die because they do not take this seriously enough. You have to stand up for yourself even though you are so sick it is the last thing you feel like doing.

Anyhow, I am going to be getting my own records here next month as I get ready to TTC and it should be interersting to go through them.

[halgal427]

good luck emily. seeing your medical records is enlightening. i hope your next pg is your easiest yet. i am 5 weeks pg today and feeling good but i'm in panic mode and trying to write a plan of attack to give to my dr. i find writing things down helps so i don't forget anything. my dr is great this time but i will still have to ask for what i need. i think that is just the way it is most of the time.
best wishes,

[MamaLily]

Kim -

Thanks for sharing. I'm sorry that your HG was so mismanaged and that your doctor didn't have enough compassion or sense of ethics or whatever to keep an accurate record of how the treatments worked (or didn't work!) for you.

I appreciate your emphasis on finding an advocate. It is so important for HGers!

Thanks and good luck to you...keep us posted on how you are doing.

- Anna

[kirsty]

when I was first pregnant my doctor told my husband the same thing, I was a little overweight and could "afford" the loss. talk about enforced anorexia!

[teddi]

Halgal,

I couldn't agree with you more. I have very similar feelings. Probably a year after my son was born I requested all my pregnancy records. Well, I didn't get ALL of them ( i know there was more stuff out there) but what I did get sometimes had comments like yours "doing better" etc. I did learn through the whole hell of HG that I AM MY OWN BEST ADVOCATE. It's so tough with #1, because not only have you never HAD hg before, you've never even been pregnant. So it's truly a tough thing to do. I THOUGHT I had good care. And it wasn't terrible- my HG wasn't *ignored*, but it wasn't until I kept researching HG and listening to what other women had done for treatment that I learned this lesson truly.

I look back now and I can only angrily wonder- HOW DID THEY NOT GIVE ME A PICC LINE? HOW DID THEY NOT DO TPN? HOW DID THEY LET ME FLOUNDER AT LESS THAN 95 lbs for so long???

HG is not curable. But it IS- IT IS- managable even to some small degree. At the very least a woman CAN be kept hydrated and nutritionally fed. It's just that Drs aren't traditionally trained to treat HG at all. And as they learn as they encounter us HGers, they always (and I can understand why) take the path of least interference (IE not using meds aggressively, NOT giving PICC/Mid lines, NOT hydrating when they should, NOT admitting to the hospital) and least invasive procedures.

This time around, I have been more vocal. I've told my drs what ideas I have about my treatment. And I will say, that since they know I had intractable HG til delivery- they have been very open to following my desires for treatment. Initially I had some trouble with getting Zofran, but other than that my NP has said point blank to me "You know better than we do what helps you the best".

There's a part in this for me to play. Some ppl aren't very good at being sick. They may be scared of getting a PICC/Mid/Central line. They may be scared of taking pills. They may be afraid of needles. There is a tendancy to want the doctor to magically make it all better. HG doesn't work that way. They can't make you better.

I have literally learned to love my PICC line. It's been a salvation for me. I can imagine that for some women, it might be a distressing thing for them, scary. But I think there's a time when you have to put your fears aside as best as you can, and just do what has to be done. You HAVE to speak up for yourself. No one is inside your body feeling what you do. (LOL, well I guess the baby is inside your body, but feels just fine I think). You also have to accept that you are SICK, VERY SICK, and try (TRY CUZ I KNOW HOW HARD IT IS) to change your hopes and expectations of being pregnant.

HG is a mean beast. There's no other way around it.

[natsmom]

I am curious as to how I might get my medical records and how will I know if they will be the original records or if some information was removed??