Treatments for Severe HG
Treatments for Severe Hyperemesis Gravidarum
There is a point where some find ourselves needing more drastic measures in order to care for us and our babies. If you have not been able to find a cocktail of medications that help and you're still losing weight and/or declining healthwise, this is the place for you. I asked 86 women who had severe HG, what medication lengths they had to go for their health. Some women had a combination of treatments, and some had only one of them. Some women tried multiple before finding the best fit for their care. Here we will give you a brief synopsis of what each treatment entails, and some experiences of other HG patients.
Nasojejunal/Nasogastric Feeding Tube
There
are two types of Feeding Tubes that your doctor may discuss with you. Nasojejunal, or NJ tubes, go up on of
your nostrils, down your throat, into your stomach and settling in your
small intestine. The benefit of this tube is that it bypasses the
stomach, and thus keeping nutrition down. Nasogastric, or NG tubes, are
similar in concept except that it rests in your stomach. Personally, I
wouldn't go for that one. Attached to the tube, you'll have a pump that
pushes for lack of a better word, "adult formula." Think of it as the
heftiest protein shake you've had. It will push it slowly, and
constantly. However, for a certain space of time (recommended usually
every hour), the pump will send a bolus of fluid to clear the line and
help prevent clogging. That could be extremely triggering if you had an NG tube, and it takes getting used to just the same.
P.S.
If you do have a feeding tube, and it does get clogged, there are
several tips to try. Using a syringe and drawing the plunger in a
pulsating motion with diet coke will likely do the trick. It needs to be diet because if sugar is present it won't work as well. It
corrodes the clumped formula enough until it breaks and is free again.
Also, I would have the tube inserted on the side opposite your dominant
hand. If you are a side sleeper, think about which side you lay on the
most, and try to pick the opposite so you're not laying on top of the
tube when you're trying to sleep.
Eden's (my) Story
I ended up needing an NJ feeding tube after all other medications did nothing to help me. I was vomiting at least 20-30 times a day, and was spilling large amounts of ketones (body's indcation of starvation) in my urine. I was losing weight like crazy, and it was only with the feeding tube that I finally gained 5 pounds over my pre-pregnancy weight: when I rounded the bend to 9 months pregnant. It was annoying because of the constant feeling of something stuck in my throat and the rawness of it. I had something that not all women have had called a "bridle" which anchors the tube in place by wrapping an attaching piece around my septum. I'm grateful I had it as it restricts movement in the tube and recommend it. My 13 month old son also accidentally caught/grabbed it somewhat often, he got better as he learned to avoid it. It was overall a positive experience because it was the only thing that had a lasting effect in helping me; finally, I didn't feel like death." -Eden
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| Brightening things with a little Christmas cheer. |
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| About to be induced, taking the tube out! |
Summer's Story
Jennifer's Story
"I got a feeding tube very early, about 8 weeks. I chose that route because this was my 3rd HG pregnancy and with my 2nd, I received little of the care I needed because of lack of insurance coverage. I got just under 85lbs and wanted to die. I could not do that again. Doctors in my area wouldn't consent to a PICC line, and I had already had 24 hour IVs for over 2 weeks with no improvement and significant health decline. They couldn't find a vein that would last anymore and IV was the only way I receive[d] meds effectively. I got the NJ tube, so I couldn't throw up the formula. Insertion was horrendous. It took about a month to get used to it. It hurts, a lot. I used it successfully until just after 25 weeks. I developed [cysts] and ulcers in my throat and sinuses which caused double ear infections and excruciating pain. The infection cleared up with a few rounds of antibiotics, but the severe pain could not be controlled, even on narcotics. We pulled it up and I maintained well enough to not need it replaced. It was the right choice. It saved my life. The doctors told me it can decrease the vomiting- which I didn't believe- but after sometime, it actually did! That was the biggest plus. The biggest downside was the discomfort and pain." -Jennifer
Rae's Story
"We decided to try an NJ tube because I normally take antidepressants when not pregnant, but could not keep them down. Because of the pain with HG, I became a suicide risk because I couldn't take them. We choose NJ over NG tube because I shouldn't be able to vomit the meds if they never reside in my stomach. After 9 hours and 2 violent vomiting episodes within minutes of putting food down the tube, we decided it wasn't worth it and had it taken out."-Rae
Marisol's Story
"I was hospitalized the entire pregnancy, because [a] Zofran pump didn't work, My meds needed to be via I.V. My HG was so severe, that I had heart and kidney problems, so apart from having dialysis, they needed to check my heart and other issues 24/7. They also needed to give me potassium I.V which is extremely painful. After deteriorating so much from malnutrition, They explained the options of either a NG, or a feeding tube they connect from your stomach. (Gastrostomy or Gastric) It looked really painful, so I went with a NG. First 3 days I felt a burning sensation. All that time they didn't let me eat by mouth, so thankfully I never puked solid stuff out my nose, that wouldn't have been fun! I did however, throw up liquid out the nose and sometimes it would mess the tube up, but there were always nurses nearby. By the end of the week, I got so used to it that it didn't bother me, plus I honestly did start to feel better with the nutrition!!! My heart became really bad from the dehydration and the violent throwing up though, so they induced Amelie at 34 weeks, and got the NG out before inducing. My whole pregnancy I was just really depressed and struggling for my life, so neither me nor my husband thought about taking pictures, looking back, I should have, it all seems like a nightmare now with no pictures to remember it by... I do feel the NG and medical attention saved both Amelie's and my lives. God bless." -Marisol
PICC Line
PICC, or Peripherally Inserted Central Catheter, is a thin, supple tube that is an IV. It will be inserted above the crease in the elbow, and the tube will continue up the vein until it's in the upper heart. (For a picture, click here.) It is beneficial because it can be the port for fluids, nutrition, and drugs. It can be uncomfortable, and even painful. With all PICC patients (including pregnant women), there is a concern and risk of infection. Because of this risk, some doctors will not even consider this an option for the Hyperemesis Gravidarum patients.
Amanda's Story
"I had my PICC placed at 23 weeks after a month and a half of IV therapy. I was blowing veins after only a few hours of use and so a PICC was our only option. Once placed I was hooked up for 24/7 fluids and Zofran (previously in a sub cue pump) I also [received] daily potassium infusions. After a while I was still throwing up and losing weight and so they decided to switch me to TPN through the PICC. I was then hooked to that 24/7. I had my line removed after my daughter was born. I hated every minute of it but it kept my daughter and I alive so for that I am thankful." -Amanda
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Amanda with her daughter nestled next to her PICC scar. Can I just say I LOVE this picture?!
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Emily's Story
"I have had my PICC line for about 12 weeks now. I got it at 15 weeks after multiple trips to the ER for fluids/Zofran due to uncontrollable vomiting. I unfortunately suffered for too long before caving and getting help at the hospital otherwise I believe I would have gotten one earlier. Surprisingly the ER doctor suggested it, not even my OBGYN, but the OBGYN agreed it was the best approach to keep me from deteriorating any more than I already had at that point. It took two attempts to finally get one, as I was too dehydrated and malnourished for the first one to slide in my veins. At first, the PICC line idea terrified me and even for the first few weeks I was weary of it because of infection risk, heart palpitations when in certain positions, and the overall implications of having a device in my arm. However I now have grown to love it and appreciate how much it has helped me. IV Zofran is 100 times better than in pill form and it allows me to medicate myself before attempting to eat. It also keeps me from having to go to the hospital every time I feel badly. Since getting the PICC line I have gained 6 lbs which is obviously better than going the other direction. I am not sure when it will come out, but at this point I am in no rush to remove my lifeline!" -Emily
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| Her PICC Supplies |
Bekah's Story
"I got my PICC line placed at 9 weeks because I was needing fluids frequently and my veins started to give out from all the IVs. The day they decided to do the PICC line they had blown two veins and were having continued issues getting an IV placed. The thing that scared me most about the PICC line was the fact that it went into a vein all the way to the area right above the heart. But, after they placed it I realized that I was way overreacting and it really was no big deal to live with. The biggest concerns after that was the possibility of blood clots, but the reward outweighed the risks by a long shot. I used my PICC line to get constant meds as well as fluids at home. I was not able to tolerate hardly any fluids by mouth so the only way I was hydrated was through the PICC. I had it for 4 months and over that time I slowly was able to survive more without using it. The last month of having it I started to have small clotting in my vein. They used a medicine called Cathflo to fix it, but each week the clot was an issue again. So, they decided to pull it and give me a chance to survive on oral meds. I am now 1 week without it and still doing good! Hopefully that continues." -Bekah
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My poor arm after they took it out. My skin started to turn raw from the weekly bandage changes, so that is healing too.
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Steroid Treatment
This is also a drastic measure when all else fails for Hyperemesis Gravidarum patients. They can be taking orally or intravenously. Doctors try to avoid it unless absolutely necessary, and even then may encourage you to taper off your dosage.
Lacey's Story
"I started with IV steroids while admitted when I was 9 weeks pregnant. I then switched to the pills when I got home. I stayed on steroids until I was 17 weeks. I tried every medication and nothing worked. My doctors said they don't have any idea how the steroids work with HG. They told me it was my last hope. It was literally a miracle. I felt like a brand new person. I ate whatever I wanted and rarely nauseated. They made me really hungry, cause me to break out in bad acne, and gave me a lot of facial hair which I did not like, but it was worth it to feel relief!"-Lacey
Carri's Story
"I've had my pump for 4 weeks. [I feel like] it truly is keeping me and baby alive... It's a small catheter that goes into your stomach attached to a small machine that is constantly giving me medicine. My doctor made me exhaust every medicine available to me, until we realized I couldn't keep the pills down, even the dissolv[ing] ones. So that is why I now have the pump. It does hurt when I get a bolus dose, but changing my site alone by myself is the most challenging for me, along with the bright red sore spots I have all over my stomach. I am not as nauseated and have not thrown up in days, so the pump is working great for me. The pump is definitely one of the doctors 'last resort' options." -Carri
Henriette's Story
"I was given oral steroids (Prednisone) at 18 weeks pregnant while hospitalized. My dosage tapered down over 10 days. Since I was vomiting so severely (despite not eating or drinking anything for a week) I sometimes had to take the dose again after vomiting the pills up. Overall the steroids had no impact on my symptoms and I ended up having a PICC placed and was discharged with 24/7 fluids and TPN on home health." -Henriette
Zofran Pump
This treatment is usually reserved for cancer patients but can be a great blessing for severe Hyperemesis Gravidarum patients. When you have a Zofran pump, you will be given a bolus of medication periodically; this time frame is something you and your doctor will discuss. You will carry the pump around while it is attached to you in a "fanny pack" of sorts. It does involve a needle that is very small. You will insert the needle into the fatty portions of your body, and you'll need to change the sites from time to time. (You can see an example of this in "Bethanie's story" below.)
Bethanie's Story
"I have had my zofran pump for a week and a half after being released from a week and a half stay in the hospital. I had three different attending OB's and they each thought I should go a different route for treatment. One of them pushed for a PICC line, but because of my past miscarriage and honestly my AWFUL fear of needles and infection, I decided to go with the pump and possibly home health when needed. I go into Corum twice a week to get my site changed (ref. Terror of needles) and they are currently teaching my husband how to do it so that we can change it ourselves. I am on 26 mg per day and it is a constant flow into the fat on my stomach. It, along with suppositories, steroids and Pepcid have me in "survivable" mode. Still pretty much stuck in bed, but I can eat and drink and only occasionally dry heave or puke, usually just from over exerting myself." -Bethanie
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Showing us her "sexy" fanny pack that is provided to carry the pump around.
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Haylee's Story
"The doctor and I tried everything oral but I couldn't keep any of it down. The Zofran tablets didn't work because I couldn't keep fluids down for the medicine to actually get through my system. I like the pump because overall it worked very well and made my pregnancy manageable. However, it gave me really bad constipation, which [was painful], and I ended up taking medicine for that. Also, it left extremely huge painful welts where the medication went in. It had a extra bolus button as well so if I felt more nauseated, I could hit it and it gave me a bit more medicine BUT it stung going in."-Haylee
Danielle's Story
"I had my zofran pump about 2.5 years ago. It was a grey rectangle that sat in a pouch that I wore like a fanny pack. At 7 weeks I was vomiting any food that I ate, by 13 weeks I lost the ability to keep liquids or meds down (not that they did anything anyway), so the pump was our next option. I finally relented and got it on at 14 weeks. The idea of stabbing myself in the belly 2-3 times per day scared me, and the only reason I was able to keep my pump was due to a mediserter (auto-inserter) that was loaned to me, otherwise it was a PICC line. It hurt, but I stopped vomiting and could almost eat daily. I have a small scar below my navel due to one of the sites getting infected, but otherwise no real side effects. It was a life saver, but I wish I would've gotten fluids more often, and sometimes think I should've gotten back on it later in my pregnancy, or even a PICC. Here's a picture of it in my belly, and you can see an irritated spot from a previous site." -Danielle
IV Infusion Therapy
Receiving fluids and medication intravenously (IV), can be a big help. Out of all the options above, this may be the least invasive. Some women with mild-moderate Hyperemesis Gravidarum even find long term relief (although relapses are not uncommon) when they are given. In moderate cases, it's not uncommon to need to have infusions weekly, or even every few days. For other, more severe cases, daily or constant IVs are needed in order to maintain a level of hydration. If you cannot handle oral meds, you can see if the medications you need can be inserted into your IV fluid bag. Some doctor offices have supplies on hand and can give you an IV without having to send you to the emergency room. Some hospitals and outpatient clinics will have infusion clinics available as well. In severe cases, it may be necessary to advocate for home health; which is where a nurse will come to your home, and you will have access to these treatments 24/7. Often, the supplies are mailed or delivered from the pharmacy. If you do get regular IVs, I would recommend trying different parts of your arm, and switching arms of course. Most nurses favor the Antecubital or AC space, which is in front of the elbow. It's often fairly easy to find a vein here, but it can limit movement quite a bit. Getting an IV in your hand can hurt, but also be less cumbersome than others. If you're going to try this site, I would suggest having a nurse that you trust insert it. My favorite place to have a long term IV put in is on the side of my wrist closest to my body. It will be anchored in place, and there are attractive netted "sleeves" that you can wear to help hold it in place and not get caught on things.
Tania's Story
"I was on IV for 6 weeks. I had the vitamin water and all other medication through IV such as maxeran, gravol, benedryl, and zofran. I was still getting sick the whole time so I didn't like my treatment, they wanted to avoid the use of steroids and feeding tube. Where I am there is not much knowledge of this illness." -Tania
Trisha's Story
"Early during my pregnancy I began experiencing severe dehydration as a result of frequent vomiting. To combat the dehydration my doctor started me on IV therapy at 8 weeks pregnant. The frequency of IVs needed to sustain my baby's amniotic fluid lead to many blown veins for me. At 14 weeks pregnant, my doctor ordered a PICC line, which is a catheter inserted in my upper arm, and my IV fluids and medication are given continuously now. Since placing the PICC line my baby has had stable amniotic fluid levels."-Trisha
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Showing us another IV placement. (My favorite IV site.) Central Line Treatment |
Central Line
Similar to a PICC line, a Central line is a source of fluids and nutrition, and is placed in the chest as shown below. The difference is location.Catherine's Story
"I had HG with both my boys, with my first it finally became medicated fluffy (ease of symptoms) but my second was horrible! I tried every medicine they had but they would only work a day or two and then I would be back throwing up non stop. Finally my doctor put in a PICC line, it took three sticks to put in an IV to give me fluids before they decided to do the PICC, then 2 sucks for blood work, and then 5 sticks to get the PICC in, my arms were black and blue. The PICC helped but I had issues with it clogging and getting pinched. My doctor pulled it after 3 weeks, and wanted me to try being pregnant without it since I was 12 weeks. That didn't last, I started throwing up non stop again. Finally he decided I needed a more permanent solution because this wasn't going away, so he ordered a central line. For the rest of my pregnancy I did at home IV treatments and for the most part I was good, I still would have issues now and then that required additional meds or hospital visits but I could somewhat function normally. This picture is me pregnant at 6 months with my line in." -Catherine
All in all.....
I hope this helps you to be able to find the treatments that you need or to educate on how bad HG can get. And if you do end up needing these measures, know that you are not alone and that you can do this!!!
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