What is Pulmonary Embolism
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation an...
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i'm 34,married, relatively healthy and had been taking a high dose estrogen bc pill for a serious bleeding condition for many years with no problems. They ran out of my reg pill and switched me to a cheaper diff estrogen version and i had all sorts of probs with it the last two months.Then out of no where two weeks ago i had excruciating pain in my chest and back for two days. (i'm pain tolerant, had natural childbirth with both my children and this was scream out loud sort of pain). at the ER after an EKG, CT scan, xrays and all that, they found multiple pulmonary embolisms in my left lung, and that some of my lung tissue showed up dark on the scan from lack of oxygen.
Since i've been home, i've done arixtra injectables for days, and then oral warfarin with blood tests every three days. The pain pills do not help the pain at all which hasn't much improved. My INR tests have been high every time, in the 4 range. I was told by a medical professional friend that warfarin can have side effects like lots of nausea, headaches ect. I have extreme nausea, throw up everything i eat, lost 16 lbs in two weeks, killer headaches and can't sleep. I feel so fatigued and anxious all the time. is this normal? do people have less side effects on lovenox? Is this common on warfarin? How long have other people experienced pain in their chest? They say i can be on warfarin for 3-6 months. My other issue is bc. i can never take estrogen again, so i'm trying a progesterone only restart the last ten days to see if my cycle returns to normal. (doubtful) But i've tried both kinds of IUD's previously, never again! condoms don't help my bleeding condition, and i've heard nightmares about depro provera. I don't want the hysterectomy they suggested (especially not on blood thinners!) Any ideas? what do you do? thank you for any ideas/support. I could really use it, i feel so lost. Posted on 11/01/09, 08:11 pm |
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Big hugs to you!
I had horrific back and side pain as my symptoms of PE (never had any shortness of breath or chest pain). One ER doc told me the pain was likely due to pulmonary infarction (tissue death). I never had any nausea or headaches on warfarin. I did have hair loss (which has lessened since I've been off warfarin). I am 7 months out from my PE (off warfarin at month 6) and I still have what I describe as chest heaviness. It happened pretty frequently at first and has lessened over time. It still occurs, but not nearly as often. I am extremely tired even at 7 months. I actually think the tired feeling is worse now than it was a couple months ago. I'd say I'm running at about 75% of what I normally do. " I don't want the hysterectomy they suggested" I don't blame you. My hysterectomy was the likely cause of my PE so I can't recommend it for anyone. I don't know what your particular issues are but have you looked into endometrial ablation? I have heard that really helps some women. Take care and keep your chin up! Even at 7 months out I'm still fumbling my way through this whole PE thing. Give yourself time to heal and know that what you're going through and feeling is totally normal. 
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thank you so much for the hugs. It's nice to know i'm not alone. Yes i too have pulmonary infarction or tissue death. Perhaps that's why the increased amount of pain? Do you take pain pills for yours?
I'll look out for hair loss, none so far. But nausea and headaches are both listed as known side effects for warfarin. And the fatigue is terrible. I can't imagine it continuing for 7 months?! is that normal? So your PE was surgery related. That's scary too. I bleed heavily for weeks at a time without stop. The ovcon50 gave me back my life the last number of years after trying D&C and IUDS with no luck. I'm sort of mourning that loss of freedom in not being tied to the bathroom and having controlled the bleeding with something finally. and now i can't take it ever again! I can't have endometrial ablation. It's risky on unstablized high levels with blood thinners (i'm 4.2), they could tear or poke through your uterus, it's can also cause PE's which i didn't know, and it's not recommended unless you want to end your fertility. Which at 34, i don't want to do. But thank you for the suggestion. My OBGYN and I are trying everything to figure this out. And thanks for the advice. I do feel lost and overwhelmed at just two weeks. I've never joined a forum or support group before, but it think it helps to know other people are going through something similar. Sending you my best wishes.
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I, too, had severe pain with my PE. I have been out of hospital for 2 weeks now and wake in the night with pain. Definite heaviness in my chest. I'm good for about 5 hours a day, then just plain tired. I have the bouts of nausea, just start throwing up out of nowhere. Feeling fine and then...here comes dinner! I guess it is the warfarin...I haven't had the hair loss and don't want it, I have thin hair anyway. And my anxiety has increased tenfold! My ICU nurse said PE/oxygen deprived patients always exhibit severe anxiety, I had to take Xanax while in hosp (very new for me).
Be good to yourself. Allow self some rest. Try to find something relaxing to do that is gentle...
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thank you maryjane. I'm sorry to hear you've been in and out of the hospital. The doctors seem to think i'm crazy for still feeling pain two weeks later. I tried to switch my pain meds from oxycodone which make me dizzy to something else and they offered tylenol. that's frustrating! I feel like i can't function, i'm either so fatigued or my chest feels like i'm being stabbed through. a nurse also suggested to me that warfarin doesn't have nausea as a side effect, but everyone i've talked to that's taken it have all said they felt nauseated or threw up, so something doesn't add up.
thank so much for the advice. i hope you can relax and heal as well.
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I lost 20 lbs, was so sick every single day for three months. I switched to the name brand coumadin, and within a week, it totally cured the nausea. that generic warfarin is just nasty, like poison if you ask me. The fatigue and anxiety are par for the course so just let it happen, and take any pill you can to help, as in pain pill, ativan whatever . your body has been through a trauma and needs tons of rest and help to relax. I am five mos out now almost and still having a hard time.
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ariel, what is the name of the progesterone that you are on? The cause of my P.E. was a generic progesterone called medroxyprogesterone. All my doctors are very adament that I not be on any hormone replacement therapy whatsoever.
And I empathize with you about the pain. My PE was excruciatingly painful, worse than childbirth. I too am highly tolerant to pain, and the PE brought out screams I never knew I had. But I am thankful to God that I had that pain, because some never experience pain and die. I am 3 months out and am just now experiencing less pain due to the PE, so it will get better with time. My prayers are with you. (((((hugz)))))
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psalm...i'm taking that exact same progesterone only pill 10mg in order to avoid a hysterectomy and save my fertility. my doctors say i can be on this for short time spans, once a month for seven days (following the initial 10 day span). The risks of the pill outweigh the risks of me bleeding to death with severe uterine bleeding on blood thinners. or attempting surgery with my unstabilized IRN levels. i'm sorry that happened to you.
Did you have a specialist? or a family doctor? I'm frustrated with my new primary care. My long time CNM is handing me off to her to deal with the PE stuff, but she's an idiot. I wanted to change my oxycodone pain pills which make me dizzy for something a little less. She offered tylenol! I'm still in so much pain i can't function, the oxycodone don't work and she's offering tylenol? that stuff never works! I'm glad to hear you're feeling better 3 months out. I have been feeling hopeless and overwhelmed. They make me think i'm crazy for feeling nauseated and throwing up (claim warfarin doesn't have those side effects) and act like i shouldn't still have pain. It's only been two weeks! thank you for the prayers. i wish for your continued healing. hugz back
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bawston girl
thank you for the reply. that's an excellent idea about switching to the name brand, i'm going to ask about that. So far they keep suggesting that warfarin doesn't have nausea and other side effects like that, as if i'm crazy. i know what the scale says! 17 lbs lost from hospitalization date two weeks ago. and now they're being annoying about pain pills...suggesting tylenol instead of oxycodone that doesn't work. how will tylenol work when oxycodone doesn't? baffles me. They seem to imply i shouldn't still be in so much pain...it's nice to hear that i'm not alone or crazy!
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ariel, I too was on a very low dose of medroxyprogesterone. I would still be cautious about using it, even on blood thinners. Do you have a pulmonologist? He has become my primary/specialist since the PE and in my opinion the one with the best/most knowledge. If not, I would ask your current primary to refer you to one.
I took hydrocodone for pain which seemed to do it for me other than the morphine while in the hospital. If you haven't tried it you might want to ask your Dr. about it. Remember ariel, you know your body better than anyone else. Don't be afraid to ask and if need be, demand for what you need. A specialist will be more understanding to your fears, pain and concerns than a general Dr.
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I don't have a pulmonologist or hematologist. they've just assigned me some stupid incompetent new primary care person. I agree i need a specialist. I am however confident in my OBGYN whom i've seen for 14 years and knows my body as well as i do. We've been through a lot together and i trust her in using small doses of the progesterone. in fact i don't think it was my regular bc pill at all and neither do the doctors, they think it was the substitute pill i took for a month that cause the PE. I would rather the small risk of PE on these pills then the likelihood i could bleed to death not on them, or end up in surgery on blood thinners.
I have hydrocodone (vicodin) which makes me itch terribly. It does nothing for the pain. Neither did the oxycodone they gave me to take home from the hospital. the morphine, and dilaudid by IV didn't help either. thank you for that encouragement...i do know myself well. And i need to be more proactive about insisting on better care, you're totally right! thanks for that. They ignored my pleas for pain pills and help with nausea for two weeks, and yet they billed me every day for something. frustrating!
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