Always Be Your Own Advocate (a.k.a. Blood for my Birthday)
A week and a half ago, I found myself in the Emergency Room with shortness of breath, dizziness, and chest pain. At 25 weeks pregnant, it was pretty scary. Something definitely didn’t feel right. But after an EKG, ultrasound, and fetal heart rate monitoring (all normal, thank goodness!), they gave me some Maalox and sent me home with a diagnosis of either “anxiety” or “acid reflux.”
While I’m sure that in many cases that’s an accurate and reasonable explanation, I was pretty sure there was something else was going on — especially as the symptoms persisted through the weekend.
It dawned on me that my mom had very similar symptoms when she’d had severe anemia requiring a blood transfusion a few years before. This got my wheels turning since I had been mildly anemic for years prior to pregnancy, with very low iron stores, and pregnancy itself often causes anemia. While it’s recommended that pregnant women take a prenatal vitamin with iron and/or an additional iron supplement, I wasn’t able to do so because of the gastroparesis and colonic inertia and my OB knew that. (I have been drinking lots of spinach smoothies and kale juice, though!).
As I thought more about it, I realized that I hadn’t had blood work since I was 8 weeks pregnant, and I was already more anemic than usual at that point. So the following Monday when I saw my OB/GYN, I asked about the possibility of my symptoms being related to anemia. She said that anemia was common in pregnancy and they’d check it in two weeks as part of routine screening. Basically she dismissed my concerns without really considering them.
That wasn’t good enough for me, so I followed up with my primary care doctor. She said it was the OB’s job to monitor anemia during pregnancy. In the meantime, I was feeling worse, now unable to walk even at 2.5 mph on my treadmill due to the dizziness and shortness of breath. Something definitely wasn’t right and I really believed it had to do with the anemia. So I kept going. I made an appointment with the nurse practitioner at my former PCP’s office. Finally — three doctors later — someone listened to me. She ordered the blood work.
Turns out that I was indeed very anemic and it was almost certainly causing the symptoms. When the blood tests came back, the doctor said, “good thing we checked this! This is serious.” My thought was, “good thing I didn’t stop at the first 3 doctors who brushed me off when I asked about it.” I was put on bed rest for the weekend and saw a hematologist yesterday (my birthday!). He immediately recommended a blood transfusion.
I got two bags of blood for my birthday and thank goodness! I’m already feeling better (and looking for some new doctors). While the last week or so has been scary and frustrating, baby and I are going to be just fine. But please take this as reminder that you must speak up if something doesn’t seem right, even if it’s hard or uncomfortable. Even if you have to get multiple opinions. You must always be your own advocate.
UPDATE 6/13: I’ve switched my prenatal care to a new practice that came highly recommended by our doula — the midwife spent 30 minutes on the phone with me yesterday talking about my needs, their practice, and whether we’d be a good fit. Feel much more comfortable with them going forward!
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22 Responses to “Always Be Your Own Advocate (a.k.a. Blood for my Birthday)”
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So glad you were persistent! Like you, my husband and I have had to learn we must keep track of our medical history and keep pushing until someone listens! He suffers from chronic pancreatitis and we have had emergency room doctors brush us off, and PCP’s who didn’t want to prescribe the meds he needs. He is also allergic to several antibiotics and we have had numerous doctor’s prescribe derivitives of those meds. . . .most of us are programmed to believe that “doctor knows best” but unfortunately that isn’t always true! You truly do have to be your own (and your child’s) best advocate! So good for you mommie, for taking care of you and baby! HUGS
Glad you and baby are doing better! That is a scary situation. I love how you always take the time to turn things it a learning experience for others! You are a remarkable person Crystal! Hope you continue to feel better.
Wow I keep having blood work every 6 weeks they keep telling me i have very low iron and also loosing my stored Iron but they dont seem to do anything about it! very frustrating I cant afford to keep going to different doctors any suggestions? Im very tired and have dizziness and just dont feel good most of the days. Im glad you kept on them and are doing better!
I am glad everything is working out for you.
It is horrific to me that a doctor would not order blood work when you asked for it- such a simple thing!
Glad you and baby are doing ok. I did have a similiar siuation 3 weeks where i was having epigastric pain. I went to urgent care who gave me a MAALOX type drink. and did and ulstrasound on my gallbladder which said my gallbladder was fine. the next week im in the ER, with the same pain. I get pains meds, and was told gastroparesis can sometimes be painful. They said they wouldnt repeat a scan since the one from the week prior was fine. Well the next day the pain persists, and I feel as though my abdomen is on fire. I go to the ER again, (note Im a nurse so i walked from my unit downstairs), I told them DO NOT GIVE ME PAIN MEDS, call my GI doctor something is worng. So after getting a HIDA scan, they see my gallbladder isnt functioning well at all, and the next day Im in surgery!
Oh my! I had a very similar situation when I was finally diagnosed with GP. It took almost four months of visits with PCP, 3 different GI docs, a month in the hospital, and several visits with the surgeons who did the gallbladder surgery. I was told I had everything but GP…even was diagnosed with depression. I have since changed PCP and am currently looking for an effective GI. If I would not have been persistent I would have been in much worse shape than I am now.
So glad to hear you are feeling better.
I know the exact symptoms you described – I needed two bags also (my count was down to 7). It was after a surgery and when I returned home I didn’t feel right (I guess I didn’t look so good either). I was bleeding internally. It is always so important to speak up! Some doctors just brush things off too easily when they think patients are over concerned about what the doc thinks is minor/normal symptoms. So glad to hear all is well… That baby is so lucky to have you as a mommy!
So sorry to hear that! What a scary treatment too. I hope you and baby get no adverse effects. Sending well wishes your way!
As the mom of 2 kids, having experienced 2 pregnancies, I have to tell you that I would fire the OB/GYN over that. How hard is it to do a blood test??? Find a new doctor. Really. You and your baby deserve better than that, and I wouldn’t trust that doctor at all at this point.
Oh my gosh, how horrific to have to persevere like that through 3 doctors to save your own life. What a scary situation. That’s amazing you held yourself together so well while at the same time feeling so sick and were an incredible advocate for yourself. Keep feeling better and I hope you find some better docs soon!
I am so glad that you are a “thinking” person. After all the things that have happened to me I know that it is difficult to find someone who is attentive to what a patient says and acts on it. You are in my thoughts – for a safe and happy delivery.
That’s been my mantra for the last decade! Be your own medical advocate because no one else will! I’m so glad you know your body and your medical history so well and that you and baby are okay
!! Definitely get a new doc! I need to replace my primary doc myself – she doesn’t listen to a word I say (says I wouldn’t have so many diagnoses; ie: RA, Gastroparesis, Psoriasis 
, if I didn’t see so many specialists. Yes, I know, get a new doc 
!
Crystal~Honey, I am so sorry you had to go through that but I am rejoicing for you and your baby. So glad you persisted. I am going through sort of the same thing with my GI doctor. I am going to a new one next week and I hope I get better results. I need a doctor who will monitor my gastroparesis more responsibly and be willing to work with me. I guess it never stops does it. Thank you again for arming all of us with the information we need to continue our search for doctors who are willing to help us through the ins & outs of gastroparesis. Be well my friend, Michelle
Good for you for persisting! Glad that it was a fellow Nurse practitioner who finally listened to her patient. What would the harm have been for the Ob to check you?! Especially with your GP. I’m glad that you got transfused and back up on your feet.
I am so glad you are ok, and you are soooo right about being your own advocate, It is sad how diligent we have to be, I am trying to find another dr. as well as mine wants to take out my stimulator. I am having to stand up and say NO and it is hard. Yeah my ob/gyn takes blood everytime… I can’t believe you had to go through what you did for a simple blood test!! Yeah like sharon said, doctor knows best does not apply nowadays. You will be great at advocating for your little one, Good job advocating for yourself. Feel better soon sunshine!
Look at you, beautiful lady! You are amazing and I am so happy to know you! Stay well, my dear.
I read this entry while I was at work on my lunch break, and when I finished I had to distract myself with something else because I was upset and starting to cry. It is absolutely terrible, the type of behavior doctors get away with.
You are right that we need to advocate for ourselves, but, at the same time, this type of thing shouldn’t happen in the first place. I think it has to do both with people practicing medicine who have no place doing so, and with clinics and insurance companies limiting how long doctors can spend with patients.
I hope you are feeling better now!
Crystal, I can’t believe your OB did not do a CBC on you. I am a midwife, although teaching now in a nursing school.. That would be an important lab test to order especially with your symptoms. So glad that you are happy with the new practice and are doing well. I am newly diagnosed with idiopathic gastroparesis, and I was my own advocate in diagnosing this condition. Your website has been invaluable to me. I have your books and they are really providing me with insight about how to manage this illness.. I was totally healthy and this happened so quickly. Thank you so much for your commitment and knowledge and compassion!.
Crystal,
So glad to hear you and your little one are ok. I just discovered your site (tonight) and I am sitting here thanking God for you. Since my symptoms have been worse lately, I have been doing a little research online and like you said, have encountered a lot of scary info. Your site is absolutely the best and most informative thing I have seen! I have been dealing with idiopathic GP for five years (at least) and was diagnosed three years ago. The only thing my GI Dr. has offered is medication. I have been taking a PPI for several years (and now I’m wondering if that is necessary and whether it is helping or hurting me.) I took Reglan for two years, which really helped my GP symptoms. My Dr. had me stop taking it in January due to the possibility of scary side effects (on the advice of his attorney I think.) Since then my symptoms are back full force. I am taking Domperidone now, but it doesn’t seem to help like the Reglan did. I am a teacher, so on summer break I can deal with being awake until 3:00a.m. with stomach pain, because I can sleep in the next morning (no kids.) When school starts that’s really hard to deal with though. After looking around your site for a little bit, I feel encouraged that maybe there are things that I can do to be proactive and help myself. I’ve already ordered your books and plan to look into your other resources. Thank you, thank you for sharing your knowledge! Sorry for the long post. It just felt good to “talk” to someone who truly understands.
I find it hard to believe that the ER Dr.didn’t order blood work right on the spot that night and check your iron levels I was always very anemic during my 3 pregnancies and this is a big red flag now that I have GP. I’ve had to have Iron Infusions because i,too,can’t torelate taking iron meds. They last for about 4-6 years and keep my iron levels normal. Had a hysterectomy when I was 32, so have a long history of bleeding/low iron problems which lead to other problems.
Good for you for continuing to trust your instincts!!