YIKES! my brush with the zofran pump....

[alfiehenry]

so i had my regular OB appt this past monday and she suggested going on the dreaded zofran pump. this, for some reason, freaked me out...it took 2 days for everything to get in place and then the matria folks started calling. my nurse in particular is absolutely wonderful...i was able to 'cut a deal' with her: raise my zofran dosage once again (and doing the 'round the clock thing) and see if that works for 24 hours and then reassess the need for the pump.

well, i just got off phone w/ the matria nurse who is WONDERFUL AMAZING UNREAL TERRIFIC. i've never met her in person but love her already. if only ALL nurses were like this...

my latest regimen has been as follows:
8mg zofran ODT at 8am
25 mg B6 tablet
2 colace, 25 mg B6 tablet, prenatal if feeling really frisky
4pm 8 mg zofran
8 oz bottle of ice water before bed for BH contrax (have been having them fast & furious for a few days now...grrrr but this is not new; had them with jack)
bedtime (8:30): unisom
midnight: get up and take 8 mg zofran

so i am now on 24 mg of zofran which is maxed out (not sure this is true; maybe it's a 'nurse-ism' to get me more in favor of doing the pump)even though i think suzanne takes 32 mg/day...)(and, truthfully, scary to me) and 50 mg B6--(am supposed to be doing 100 mg per perinatologist but any bit over 50 mg makes me sick). BUT [crosses fingers/touches wood/spins around 3 times] i have been YC (that's "yack count")free for 2 days and several hours. this is the longest 0 YC stretch i've had since july 8.

matria nurse is letting me stay on the oral zofran for now!!!! she did tell me that i've maxed out and that while this is fine and safe for me and for baby, IF i break through this maintenance dose (the amount it takes to keep me from vomiting) and have a YC of 2 in one day, then it's pump-city for me. TWO? wowsers. i was thinking she'd say more like 4-5 hurls in a day...anyway...this is good news to me for a few reasons:

1. i have a concrete threshold against which to measure my illness...one more bad day and i'm in trouble.

2. i avoid the pump for at least another day

3. this was a HUGE HUGE HUGE wake up call to me. i've obviously been in denial about how sick i've been. i asked her about residual damage from having HG and she asked if i'd hurled blood and i said yeah and she said 'well, you can do permanent damage to your esophagus from throwing up 3 or 4 times a day for several days in a row.' i got really quiet and she asked if that had happened and i said 'well...um...' and she goes 'tell me' so i confessed that back in late june & early july, i had WEEKS where i was sick 6-7 (or more...6-7 was a "good" day) times a day. she just went 'oh, man. that's not good.'

i'm sorry i've been such a downer lately [ok, am crying now for some reason]. this is really, really wearing on me and you guys have all been tremendous support to me. it's still hard to explain. i think about other preggos all glowey and happy and over their "terrible m/s" and i get terribly envious and, well, almost angry. my OB and i have figured out that last pg, i was depressed throughout the majority of it due to the reglan i was taking...so i'm avoiding reglan this time around and have certainly not been so negative about being pg. plus, everytime i look at jackaroo, i am floored to think I MADE THAT. it's just that when this crap first started, i circled july 17 on the calendar as the day i would be out of the dreaded first trimester and this nonsense would pass. i've doubled my time with this since then...am now 20 weeks and 3 days and taking insane amounts of gosh-awful expensive medicines just to maintain a certain level. it's terrifying. matria nurse says she is very unsure if i'll ever be able to come back off the zofran before delivery since my maintenance dose is so high. this freaks me out, too...

if you've read this far, you get a gold star, a never-failing epidural and a stash of co-pay free zofran.

thank you, friends. you are all the best therapy a gal could have. in a nutshell, i feel like i've finally been given some advice and a structure to this whole thing and how to deal with it and when to ask for help.
...
Laura

[dwtegli]

Laura,

I am glad you found a good nurse, they seem to be pretty hard to find. As for the Zofran, 32mg per day is the max any possibility of her upping it to that? At least the Zofran is helping to keep you YC (I like that) down. Hopefully you can maintain and stay off the pump. Good luck, and please keep us posted.

((HUGS))

[nomore]

Laura,

I know this is going to sound silly, but what you are feeling is perfectly normal. Normal emotions for an Hger that is. I found, espeically with my 1st pregnancy, that a good cry was sometimes just SO needed.

Here is what I have to say:

Ive been on the pump now for roughly 12 weeks. Its made a HUGE differce to me. I react SO much better to the zofran this way. Im really getting SICK of the pump though... my poor legs are really fed up with being stuck

But, I understand the reality of where you are coming from. I was so against the PICC, but mainly for the reason that I didnt want to admit I was that sick again.

By the way, you can take up to 32 mgs of zofran. And, many people find the sub Q and IV zofran to be MUCH more effective than the ODT or oral.

I am currently taking 28 mgs daily via sub Q. I was never on a dose this high in pregnancy before - 24 was as high as I went, and it HAS made a difference. Also- are you taking anything else with the zofran? I take phenergan also. The suppositories dont make me that sleepy, so I can still care for my DD.

And Laura, we are due right about the same exact day. I know, even though Im so much better than the 1st trimester, I have days where I get so down- Im SICK Of being SICK. I just want to feel good..... I think Id worry if you DIDNT feel frustrated with the HG at this point...

Look at things this way.... One minute at a time, one hour at a time, one day at a time. one week at a time. DONT think about how many more days etc we have to go. Just focus on getting though the next one. Short term things are WAY easier for me to think about positively- IE: U/S date, trying to make a playdate for DD at our house, etc. I cant handle knowing exactly how many more days I have pregnant... which is exactly why I HATE the tickers that tell you that specifically!

HUGS- we will get through this.

[momof2girlsandaboy]

Laura,

I have the matria nurses too. They are truely wonderful. They take care of you. Sometimes you need to be aggressive with them but with HG I think you just sometimes need to be aggressive. I have the zofran pump. I have had it for 7 weeks now. It is my lifesaver. I couldn't take zofran orally at all. I can't believe that it has me down to only getting sick one time a day. You know what I really like about the pump. The demand boulous. I know it sounds crazy but you can get the extra push that you need sometimes. My legs still look terrible. I know have a double PICC line so may legs are starting to heal. So in other words don't worry if you have to get the pump.

.

Hugs to you

[k3tglazier]

I have also been on the zofran pump for 12 weeks and for me it also made a HUGE difference. I took zofran orally and ODT with my previous 2 pregnancies and and never recovered from the HG I was very sick the whole 9 months so I had been preparing for the worst. However with the pump I feel like I have at least got it under control. I almost feel like a normal pregnant person in the 1st trimester with normal "morning sickness. Since I am 21 weeks that is still not "normal" but WAY better than any of the other pregnancies. I am actually somewhat functioning like a human.

My legs were very sore and I was very sick of sticking myself also so with my wonderful Matria nurse we decieded to try to come off the pump and take the ODT. I am still on 24 mgs which is down from the 32 mgs I was taking sub-Q and I am doing great. It has been 2 weeks almost since I have been off. I can tell a difference but I think that is because I get busy and miss my dose times by an hour or so and then I can tell and the pump was so reliable to get your meds around the clock. But by far worth being off the pump.

So in a nutshell I feel like if the zofran keeps helping orally great!!!! But going to the pump is not the end of the world and has helped me tremendously!!!!!! IF and I mean IF I ever get brave and do this again, I will have the pump again in a heartbeat!!

So this is so long!!!
Hang in there
Keri

[rjdecker]

Laura,

I am sorry you are feeling so crappy. The zofran pump can really help, though. I haven't had a pump, because the zofran never touched me. But the ladies here are so knowledgable and have given some great advice.

It is great you found such a good nurse. They are rare and far between. Hang onto that one!

Keep us updated on how the pump is working for you.

Jenny

[alfiehenry]

thanks for all your comments and advice, ladies. it's so nice to be able to hear from women who actually HAVE the pump AND who actually endure HG instead of the vague comments of the OB ("well, come get fluids when you are feeling really bad..." HUH? so like every day? )

managed to hold it together yesterday but still had one pretty ugly yack attack around 7 (which was 3.5 hrs after my last Z oral dosage). ugh. i was so upset about it due to the 'ultimatum' given to me by the matria nurse (well, upset's probably not the right word...concerned, i guess).

i am probably just being a baby about this and should suck it up and do it. my dad (a pharmacist) says he has diabetic patients just about every day who finally 'break down' and get an insulin pump and then when they see my dad next, they go 'man, why on earth did i walk around feeling so shitty for so long?' we'll see how this weekend goes...

the good news is that the OB is not riding me too hard about it because i've gained weight (up 6 lbs from pre-preg). i was shocked...8 times out of 10 the only thing that stays down is some type of dinner...i can nibble that and pop a unisom and then go straight to bed (husband home by then to watch jack...). if it works, it works, right?

hope you are all getting some relief!!!
and, again, a million thanks!
Laura

[BrandiJK]

Laura, I can't offer you any advise on the pump, and the pills seems to be miracle for me, and I do thank my lucky stars they are. I was getting close to a PICC line, and talked to doc about it too. She was ready to try, but only after I tried the zofran. And, since I started taking that I have not had an IV, AND been YC (I loke that too!) since Sept. 1st (last date for both).

I can say, however, that if I thought it would help me out more, I would go ahead and do it. However, I have no idea how a pump works or what it looks like. Maybe if I saw one, I would run the other way too.

I am sorry your having a hard time. I always wish there was some magic wand I could wave to make everything better. But all I can do is say, "we are here, feel free to cry on our cyber shoulders because I sure as heck cry on yours." one moment at a time really is the key.

I hope you can get some relief soon.

And...is there ANY hg woman who goes through her whole pregnancy (esp. those peak months) who throw up LESS then 3-4 time a day in a row? I don't know about you all, but i am going to take a guess and say that most of us would feel lucky to be throwing up that little!! Don't over fret about it now, that long term stuff is long term, so worry about it later

I hope you get some relief and keep us updated! And congrats onthe weight gain!

[aaronsmommy]

I was on the zofran pump, and I asked for it!

I was on 34.4mgs/day for months through Matria, and was told that was the maximum. I loved my nurses too (or at least most of them).

I'm surprised your insurance co is paying for Matria without the pump, but hey, don't complain especially if it's working.

I threw up way more than 3-4 times a day for all but about a month of my pg, and as far as I know, everything is just fine in there.

[AmberWest]

Oh Laura, I'm so sorry you are still feeling so crummy. `hugs`
I haven't had the pump, but in a former pg I had a picc and to me that was the end of the world. Sometimes I can be such a big baby.

Try not to worry too much about being on the 24 mg of zofran. I've been on 32mg VDT (vaginal disolving tabs) for months now, and if it weren't for that I shudder to think what it would be like. I do the vaginal insertion of the tabs because I still have no clue what will be a non-puke day, and which ones I'll be yacking up all day long, and in my eyes at least the meds will be in my system no matter what. I worry to think that you have a 2 puke a day limit. I mean, if you have a few days of no puking, then have a puke day it seems shocking that you can only do that twice. I mean, twice? Who besides a fluffy bunny can only throw up twice on a bad day? However, considering how ill you've been I can understand your nurses caution.

lol I remember all to well circling the end of the first tri for me as well, then fighting the need to burn said calander when I was still sick as a dog. Now, knowing that I'm just going to have to deal with this on some level till the babe is born, I just look at my ticker and rejoice over the fact it's now going down after passing the 20 week mark, instead of up.

I also understand fully your frustration at this point. When I hit the 20 week mark I could hardly be excited about it because all I could think was crud, you mean I have to do it that much longer yet? It gets very wearing on the emotional state that's for sure. I'm happy to know that there are at least days when you can look at Jack and remember what you will have to show for all this suffering.

Keep up the good work, really, halfway is far better than these poor girls still in the first tri. The other day when I saw someone with a end of April due date I had a full body shudder at the mere thought of it.

You really are doing great. Keep your chin up and keep us posted.
`hugs`
Amber

btw. Where do I collect my gold star?

[IslandDreamer]

I'm a wuss and avoided the idea of the pump because of the needles and all. I've been taking 24 mg/day of Zofran ODT since 8 weeks, and yup, I do bump up to 32 on the really hard days, but those are much less frequent now. (30 weeks...yippeee). And for a long time I took the ODT vaginally since the taste was so obnoxious . Worked just the same, and I did finally confess this strategy to doc who thought it makes sense and he had heard of it (though I'm sure he had heard of it from me mumbling about it in 2nd tri.)

Do some of you REALLY feel better with the same dose of Zofran through the pump as in the tabs or dissolvable? Perhaps I made a wrong decision.

I took lots of Phenegran suppositories with Hope and never got the "buzz" (as in pass out from sleepiness) I got in the ER with Phenegran IVs...is it the same sort of thing with the Zofran pump?

[momof2girlsandaboy]

I too hate the pump because I had to stick myself once a day. I know have a PICC line so the pump is going through the PICC line. I tried to take Zofran even the dissolving ones to no avail. I just couldn't keep them down. Before I left the hospital for the second time they made me get the pump no questions asked. I love it. I only have to change the pump 2 times a day so I don't have to worry about when to take my pills. It is always pumping medicine into my body. I also like that fact. Now I have to admit the just zofran doesn't do it for me. I am also on 25 mgs of Phenegran twice a day and have a daily iv. I do like the pump though. Just my thoughts one. The only side effect I have had is constipation but that seems to be the norm with zofran at all.

[IslandDreamer]

Glad something is working for you. That's great.

Ya, the Zofran became impossible to keep down, even the ODT would start me heaving, so that's why I started the vaginal method