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Re: New and pretty overwhelmed

Posted: Tue Jul 24, 2012 07:46 am
by blythe
Oh - and I'm glad that "argument" explanation helped you - I know it has helped me tons in understanding this disease! I think Caryn uses the word "negotiation" if that helps in searching for her exact words!

I don't know the mechanism, but it seems to make sense that if your blood pressure goes down and nothing else changes, that it would have to beat faster to keep your body at the blood flow(?) it's used to. I remember I had one really low bp reading but my pulse was through the roof, and when I mentioned that to my doctor she just said that was what she'd expect. If anyone else has more info that would be great, it's not something I've lit searched so I'm just going on guesswork.

Re: New and pretty overwhelmed

Posted: Mon Jul 23, 2012 10:28 pm
by blythe
I'm so sorry you're feeling awful and feeling unheard and blown off on top of it! I don't know what them MFM will say, but I would keep the appointment. I tend to get much more relaxed if the MFM says it's normal - even if it's completely miserable - pregnancy. I'd also have the MFM reiterate when you should be concerned, what symptoms, bp, etc. to call in for and when to go to L&D. You could also ask when you *shouldn't* go. I imagine they'll still want you to get things like having trouble breathing checked out.

Alviarin had a lot of great suggestions, I hope those help!

When is your appointment again?

Re: New and pretty overwhelmed

Posted: Mon Jul 23, 2012 00:00 am
by alviarin
Yikes that does sound pretty scary. I've felt short of breath due to at the time uncontrolled asthma, more like winded climbing the stairs.

However I've also felt very weak & short of breath due to severe preeclampsia, and that feeling was definitely worse laying down. They were worried about my fluid input being way more than my fluid output- I was retaining a lot of water and the swelling has to go somewhere, potentially lungs (ie pulmonary edema). I can gain several pounds literally overnight due to swelling from pre-e.

I'm not a doc but I would hope that the tests they ran (EKG, chest x-ray) would have turned up any pulmonary edema or peripartum cardiomyapathy (which can also cause shortness of breath and swelling in pregnancy). Doesn't mean that something isn't heading amiss but hopefully means you are ok for now.

Are you seeing an allergist or pulmonologist? Maybe asthma could be contributing to your symptoms and new/different meds could help? Maybe an allergist could check your peak flow and even run a lung function test?

You could always request another 24 hour urine even if it is just for your "peace of mind". They are cheap as lab tests go, and ok results might give you some reassurance at this point, or high protein might give the docs a reason to take your concerns more seriously.

I hope this helps, if anything changes please continue to advocate for yourself even if it means heading back in to get checked out again.

Re: New and pretty overwhelmed

Posted: Sun Jul 22, 2012 04:10 pm
by arwen
Okay, I'm pretty convinced at this point that my OBs, L&D departments in general, and the ER are all utterly, completely worthless. I think from now on, unless I'm gushing blood or blacking out, I'm just staying home and saving myself the aggravation.

Two days ago, I started with some pretty bad shortness of breath, it came on while I had been laying down for over an hour. In all my 30 years of being asthmatic, including one other pregnancy, I have never felt this feeling. It was like suddenly, half my lungs went missing, and I was drowning. I ended up sitting a lot instead of laying down, which of course made the edema in my feet worse. I also had mild chest pain and my arms would not stop hurting.

That night, I woke up twice feeling as if I was drowning. The second time I couldn't go back to sleep. My inhaler did nothing--why would it? My lungs weren't closed, I wasn't wheezing, they were just compressed. The chest pain was there too. By about noon my pulse was just over 100, even though my BP was around 115-120/65-75. That's what's been happening the past 4-5 days: lower BP, higher pulse, makes me feel like crap, and I can't get rid of this headache. The OB I saw on Thursday was practically calling me cured of PE, which I thought was impossible without delivery.

I called the OB once I got past 100, she said to go in to the ER, not L&D. She immediately concluded it was asthma exacerbated by the heat, even though I pointed out that a) I'm on modified bedrest and have not been outside except for the doc and L&D for weeks (what part of I. Sit. In. Air. Conditioning. All. Day. do people not understand?!) and b) in my 30 years of being asthmatic, I've never felt anything like this before. Plus, I had chest pain. My dad went in for mild chest pain a few years back, turned out he was having a heart attack and most people would have just ignored it; he avoided the damage most people would have had by going in as soon as he felt something was wrong. The OB blew that all off saying something along the lines of most people feel lousy in their third trimester and implying I should suck it up and deal, but if it would make me feel better, to go in to ER.

They ran some tests in ER, EKG and chest x-ray, and concluded that everything was normal. Their theories were that a) I must just not know what asthma feels like, b) I must just not know what my baby moving feels like, c) it's the heat, or d) I'm pregnant and should not expect to feel good. I didn't know whether to scream or cry.

They sent me to L&D to monitor the baby, who was fine. I got so frustrated in ER, the nurse called my OB (who had gone home while I was in ER, I didn't see her in person) and I talked to her. They didn't want to give me my bloodwork ("why would you want that?") but I insisted to the OB that I want to bring everything to the MFM and not have to wait for things to be faxed over. The OB said my headaches were sinus headaches, and that I really didn't need the MFM but if it would make me feel better I could get a copy of my labs and keep the appointment. I didn't even ask about another 24-hr urine collection, I figured I shouldn't waste my breath. I asked why I had chest pain and she just said hey I'm pregnant and babies sometimes make you hurt...well unless my uterus is practically in my throat, I'm sorry but that makes no sense.

Everyone said my bloodwork was completely normal. Except it isn't. Red blood cells, hemoglobin, hematocrit were all slightly low. Neutrophil count was slightly high. Urea nitrogen was slightly low, chloride was slightly high. Total protein was slightly low, AST(SGOT) was low, alkaline phos was 112 (high). Urine test was negative for protein and nitrites, but had large leukocyte esterase, high white and red blood cells, and no bacteria. The doc said the only thing she could think of was maybe a UTI but that still didn't add up. And I know what a UTI feels like, this is not a UTI. Basically they sent me home with utterly no explanation for anything and told me not to worry about it, it's not like there's anything wrong with me except that I feel like crap all the time, now have chest pain that comes and goes, and still have a headache I can't get rid of.

Has anyone had an experience with an MFM blowing them off? Cause now I'm afraid that they're going to look at me like "why are you wasting our time?" I'm so beyond fed up I don't know what I'd do at that point.

Re: New and pretty overwhelmed

Posted: Fri Jul 20, 2012 05:43 pm
by arwen
For your readings that are going up and down - search Caryn's posts, she has a lot of good explanations about the biology. If I'm understanding right, it's like there is an "argument" between mom's body and the placenta, so sometimes levels are high, sometimes they are low. But it's virtually inevitable that the placenta will win by hijacking mom's internal systems, it's just a matter of when. That's why we just say "keep watching and reporting".
I didn't see about this particular point, but I learned a lot from Caryn's posts! This point, though--wow does this stick out in my mind. Every time I come away from the OB's office, with the exception of that appointment on Monday where the doc suggested I see the MFM, I feel like maybe this is somehow not real. Maybe I'm just nuts, or being a total hypochondriac, or something. Then I come around here and learn FAR more than I did in the doc's office, and that tells me that no, I'm not wrong for being concerned about a collection of weird, but as-yet subtle symptoms. That explanation, Blythe, is PERFECT. It explains SO MUCH and I just WISH I was hearing stuff like this out of the people who should be a little more on edge, IMO!!

My last OB appt, on Thursday, was both good and frustrating. Good because my baby was moving around much better. Bad because the doc was like well your levels are normal, so we could be out of the woods! She really WANTS this pregnancy to be normal. I do too! But it's. just. not. I told her hey I'm glad the numbers are down and I'm not going boom right now, I'd love to get to at least 34 weeks like one of the other OBs was saying we hopefully could. That would put me at next week. But I reminded her: something is wrong. I don't know what it is, I don't know what to do about it, but something. is. wrong. She moved me to once weekly appointments instead of twice, I only went along with this because the MFM appointment is Tuesday and I'm assuming they're going to probably do a NST. If not, I'm calling the OB that day and trying to get myself in for another one after the MFM appt.

I'm getting very swollen at times. It calms down somewhat but then it gets bad again. My arms will be so swollen I'll have tingling pain from elbows to fingers. This is what happened after I had my daughter. Sometimes my feet have creases at the top from the fluid gain. I gained another 2 pounds from Monday to Thursday. I'm still having the constant, low level irritated uterus feeling, on the contraction part of the monitor it looks like constant, low-level, long, very even waves. The doc tried to say I'm not contracting...okay that's fine, but my uterus is always doing something, it's not real pleasant.

The funny thing is my blood pressure is definitely trending downward, on toward 120-135 over 70-85, but my pulse is almost always above 90 when it usually is between 75 and 80. My lung irritation is worse today. As usual, my inhaler is not helping, it opens the bronchial tubes but doesn't stop the irritation since it's not a steroid. I'm having mild headaches off and on. No URQ pain, just some mild middle back pain similar to what I had last pregnancy toward the end.

Did anyone else have their pulse just start to go up as their BP went down?

And thanks so much Alexis for saying that...I am really grateful to have people in the know who AREN'T looking at me like a crazy woman every time I open my mouth!!

Re: New and pretty overwhelmed

Posted: Thu Jul 19, 2012 04:36 pm
by alexis
Also, you are never wasting anyone's time by posting here--we're always happy to help when we can, even if it may only be support and reassurance!

Re: New and pretty overwhelmed

Posted: Wed Jul 18, 2012 10:52 pm
by blythe
These subsequent pregnancies are just soo hard. We're on edge, our bodies are on edge, and our docs figure they know what's going on and can handle the complications, but in the meantime *we're* the ones on the cliff waiting for it to crumble. ((hugs))

For your readings that are going up and down - search Caryn's posts, she has a lot of good explanations about the biology. If I'm understanding right, it's like there is an "argument" between mom's body and the placenta, so sometimes levels are high, sometimes they are low. But it's virtually inevitable that the placenta will win by hijacking mom's internal systems, it's just a matter of when. That's why we just say "keep watching and reporting".

Your doctor sounds like he was amazing in your last pregnancy, I'm sorry he hasn't been as attentive this time around. Good luck at the MFM!!

Re: New and pretty overwhelmed

Posted: Wed Jul 18, 2012 03:36 pm
by arwen
I guess this is another thing that aggravates me. The OB I see the most out of my practice is the one who delivered my daughter. I hadn't seen him much before she was born, the OB that I saw most was delivering someone else at another hospital and couldn't get to me in time, so he was her backup. I had seen him when I had the flu, and he said he had no problems with aggressive management of my situation, including hospitalization, which made me feel better, especially since he said he'd tell my insurance company where to go if they gave me problems. He was awesome during the delivery. Totally calm, totally okay with modifying things because I was having a hard time breathing and we were nearing the 24-hour mark since my water broke and I was utterly drained. When I swelled up so badly in the weeks that followed, when breastfeeding turned out to be such a train wreck, he was really, really good. Even though we didn't know what was going on, he had no problems with my coming in a lot. Eventually I had to be referred out, my GP sent me for heart tests and blood tests and urine tests (no 24-hr urine though, in retrospect, I wonder if that would have revealed anything), but I made sure to keep my OB posted and he was great about that too.

Now, I feel like things were just brushed off by him, and that he's pushing vaginal birth no matter what. I can't even get a proper pro/con analysis out of anyone in the practice, everyone just seems to want to take a wait-and-see approach. All they want to do is induce, even though I've told them I've basically been down that road before, I barely got through it, and that was with a relatively normal pregnancy. They're treating this possible PE like it's predictable, when I know from this site that PE can suddenly blow up so it's NOT predictable. I can't take any more wait-and-see. My nerves just won't handle it at this point. I want a plan, even if it doesn't have deadlines or timeframes, even if it's just a flow chart of if this, then that. And I'm hoping this MFM specialist will be better about laying out pros and cons and figuring out a plan.

Re: New and pretty overwhelmed

Posted: Wed Jul 18, 2012 03:05 pm
by hannahsmom
Hoping things are okay for you right now. Please update us when you can. I switched OB's during my second pregnancy. My OB had become one of my very best friends, but when I started getting PE symptoms at 25 weeks, I wanted to switch to my high-risk doc. She said no and hospitalized me in a hospital with a low-level NICU. If I gave birth there, the baby would have to be transferred to a high-level NICU. She said I now had severe PE and refused to let me out of the hospital to go see the high-risk OB. She was preparing for an emergency c-section. Her partner (also an OB) came to see me privately and said I should be transferred to the next city because the hospital I was in couldn't handle me or the baby. So I ended up having to demand to be released and was transferred by ambulance to the next city over to the hospital that the high-risk OB worked in. I had been down the road of a micro-preemie once before, and I wanted the best care if it happened again. The high-risk OB got me to 35 weeks. After that, my regular OB and I didn't speak for several months. I felt like I had lost my best friend, but we finally met and talked it over, and now we are really close again. You have to do what is best for YOU and the BABY. What everyone else thinks does not matter at this point. I am keeping my fingers crossed that everything turns out for the best.

Re: New and pretty overwhelmed

Posted: Wed Jul 18, 2012 02:05 pm
by arwen
He perks up with juice, just slowly. I'm told if he doesn't perk up within ~30 mins to call. In the meantime, my BP is zigzagging more, I'm feeling either faint or like I'm going to explode. My pulse (resting) is pushing 100 more and more. It used to be around 80. I'm constantly feeling like my body is "wound up," yet at the same time exhausted. My MFM appointment is Tuesday, it can't come soon enough.

I hope I haven't wasted everyone's time here, I just don't understand why borderline numbers that I was previously told by one of the docs could only go up ended up going down. One of the OBs I saw said it was virtually guaranteed I'd be over the threshold next test. But there is *something* going on and if nothing else, your suggestion to see a MFM may be the key to figuring it all out, so even if I'm not having PE, I still appreciate everything so, so much.

I think at my next OB appt (tomorrow) that I will ask for another 24-hr urine test and see what is really going on here. Last time, I filled the collection jug and had to bring in the rest of the sample in a separate container, and it looked like the tech was guesstimating the volume. I also think they had my weight down wrong, it may have been off by 10 pounds--no idea if that makes a difference. I'm not really sure why they don't just give pregnant women 2 containers, it's not like we don't pee a lot, right? :P