Calling all Catholic hematologists

An update on the Coumadin/contraception issue…

I had the big visit with the hematologist this morning (if you don’t know the story behind that, I first wrote about it here and here). It’s the follow-up visit I was waiting on to decide whether or not to switch doctors. And we have a verdict on that one. He was in a big hurry, as usual, and as he was walking out the door I asked him how serious the whole Coumadin/pregnancy issue is in the case of an unexpected pregnancy. He nonchalantly replied as he took another step out the door, “Oh, the risks of birth defects are really high, you’d need to have an abortion if you got pregnant while on Coumadin.”

I choked on the water I was sipping and sputtered out that it was against my religious beliefs. He said that in that case I must use multiple different forms of non-estrogen birth control (like condoms plus spermicide). By that time he had actually walked out the door, so I didn’t want to chase him down the hall yelling, “But what if birth control is against my beliefs too?”

I was so upset by that conversation, and not just for the obvious reasons. Not one of the three specialists I’m seeing had mentioned anything about the risks of Coumadin and pregnancy, I only knew about it from my own online research. Also, Dr. Hemo didn’t get all concerned about birth control and recommend a very conservative option until I told him I wouldn’t be open to abortion, as if abortion isn’t something to be avoided at all costs.

So, yeah, I need a new doctor. New doctors, actually. The whole thing is really daunting. Some thoughts off the top of my head:

- None of the doctors in my area listed on One More Soul are a) hematologists or cardiologists or b) are on my insurance plan. (Anyone know of another source for NFP-friendly doctors?)

- Two other doctors have concurred that nobody in their right mind, or at least nobody who dislikes being sued, would take me off of Coumadin before six months. If the clot returned and caused problems it would be clear malpractice. I will run this by a pro-life doctor if I ever find one, it’ll be interesting to see what they would do.

- Coumadin is hard to manage, as my twice weekly blood draws have shown. I don’t think a general practice office would be set up to do the frequent tests that I need. Dr. Hemo has an in-house lab where they can run the test on the spot and get me updated dosage information the same day. My dosage changes all the time depending on those results. Evidently this is important.

- The cardiologist said that twice daily shots of Lovenox (heparin) *might* be an alternative, probably the only other option. My portion of the prescription when I was only on once daily shots was $850/month, so I’m not so sure about that. Of course I’ll fight it with my insurance company, but I think they’re actually following the terms of the contract on that one.

- I’m such a wuss. I get really stressed thinking about switching doctors because I feel like it would offend my current doctor and his staff. How lame is that.

- I’m going to call my priest tomorrow to set up a meeting.

So that’s the situation. The things I mention above are just a list of the dilemmas/concerns I’m facing, I know that some of them are not certainties (e.g. maybe a general practice office could manage the Coumadin blood tests, maybe somebody would be willing to take me off of Coumadin and prescribe something else, etc.) I just have a lot of work to do: I need to get on the great NFP message boards that have been recommended to me, get on the phone with some of these doctors and see if I can meet with my priest.

This situation is so strange, sometimes I like to think that there must be some sort of purpose to it. NFP had been on my mind heavily for the past few months (as a glance through my May archives will show) and then, just a few weeks after I embrace the Church’s teachings on contraception, out of the blue I come up with a condition that requires me to be on medication that is completely incompatible with unexpected pregnancy. I don’t know if I’m supposed to be learning something here, or if it’s the devil testing me or what, but it feels like there’s some sort of purpose — for better or worse — behind this situation. But what on earth could that be?

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Enter the Conversation...

24 Responses to “Calling all Catholic hematologists”
  1. Miki says:

    You don’t know me, I followed here from a link on another board (posted by a concerned friend of yours, I think). Anyway, there are autoimmune conditions out there that only require blood thinners during pregnany, and my rheumatologist has assured me that it is very possible to have a successful pregnancy and healthy baby with careful management — so there must be some options out there. Do you have a high-risk OB or maternal/fetal medicine specialist in your area you could consult with even before becoming pregnant?

  2. Teresa H.T. says:

    You don’t me, either. . . but I wanted to reaffirm that, used conservatively, NFP should be just as effective as most forms of contraception. “Playing it safe” might mean, in your case, a good deal more abstinence than normal (for instance, using only Phase III time), but it can be done.

    I don’t know what to tell you about the doctor, though. There ARE doctors who trust NFP even though they themselves aren’t NFP-only physicians. So there might be a hematologist in your area who would accept your use of NFP while on the drug. I know of no easy way to find one, unfortunately.

    Oh, and do join the Delphi NFP forum. ;-)

  3. Julie D. says:

    As to your question about the timing, I think I’d look at it the other way … God made sure you got the picture so you had the info you needed before this became a problem. :-)

  4. Anonymous says:

    You don’t know me either, but I know the other two people you don’t know. ;-)

    I understand what a blow this is, without having had a lot of time to process it. You need that time. But also consider that there are women with all kinds of life-threatening conditions for which pregnancy is ill-advised – and nfp is actually safer for them than the pill because they will know if and when they ovulated, whereas women who are on the other forms of birth control really don’t know if they’ve had a surprise ovulation or not ( you know, “Pill-babies”).

    So, step back. Take the catholic out of this and just consider it medically. It’s better for you to use nfp in this situation. If the coumadin is messing with your fertility signs, that could be problem . . . you’d need help to work with that issue.

    Prayers!

  5. SteveG says:

    I’ll offer more tomorrow, but my initial thought is that if you can find a NFP family practitioner/primary care physician, that’s probably a huge start.

    Even if they can’t necessarily handle the hematology aspect, certainly there’s no one better able to connect you to the right people who can help you.

    Not to be cheesy, but I think contacting your priest, and an NFP family practitioner is the first step to building a network for yourself that will get you to the answers, not necessarily provide them.

    The other part of that network is being able to practice NFP with confidence. I’d suggest contacting someone at the Couple to Couple League to counsel you. They have a teaching couple search feature here…
    Search for a teacher

    …that will help you find someone in your area who can specifically counsel you on NFP.

    It doesn’t seem that there is an easy answer here, but I feel certain that if you connect with the right people, they can guide you to the right answers.

  6. Barb, sfo says:

    I’ve got nothing that everyone else hasn’t already said. Julie is a genius, by the way.
    Praying to the Blessed Mother for you.

  7. Adoro Te Devote says:

    Is Coumadin your only option as an anti-coagulant? Are there other drugs out there which will do the same thing but might not have the same risks?

    If you haven’t already, check into other drug therapies to see if there are options.

    Have you contacted the John Paul IV Institute? If not, you should look them up…the specialize in fertility, and they may have seen your condition prior to this.

    I will keep you in my prayers!

  8. Jennifer F. says:

    Thanks to whoever posted my story in the message board! I appreciate all the feedback.

  9. Jennifer F. says:

    Julie D. – Wow, great point!

  10. Anonymous says:

    Just emailed you some links Jen. Hope they’re helpful!
    ~Blair

  11. Peony Moss says:

    Dear Jen, I surfed in via Shea’s. Praying for you and for your little one.

    Second miki’s suggestion of seeking out a high-risk OB or a perinatologist. You could also try http://www.popepaulvi.com for a referral.

  12. Martin says:

    It was me who posted something on the Delphi NFP Talk forum requesting help. The forum is here: http://forums.delphiforums.com/nfptalk/start

    You don’t know me either … I just happen to read your blog on occasion. I manage the Papal Encyclicals Online website.

  13. Jennifer says:

    Um…still not getting why heparin and/or lovenox is not an option here?

    I asksed Jim and he is not a hematologist of course but he has never heard of not being able to use heparin or lovenox on a woman who is pregnant or may become so.

    Did you ask about heparin or lovenox?

  14. SteveG says:

    Jennifer:
    Did you ask about heparin or lovenox?

    Jennifer F (from the original post):
    The cardiologist said that twice daily shots of Lovenox (heparin) *might* be an alternative, probably the only other option. My portion of the prescription when I was only on once daily shots was $850/month, so I’m not so sure about that. Of course I’ll fight it with my insurance company, but I think they’re actually following the terms of the contract on that one.

    So it seems to be an issue of cost, which has me thinking…..what can ‘we’ do to help? Can the parish offer assistance? Can some of us here offer assistance. Just pondering….

  15. Jennifer says:

    Lovenox and Heparin are interchangable and Heparin is a mere fraction of the lovenox cost.

  16. Jennifer says:

    —just to clear it up lovenox and heparin are NOT the same thing…but they can be used for the same indications and heparin is cheaper.

  17. SteveG says:

    Lovenox and Heparin are interchangable and Heparin is a mere fraction of the lovenox cost. —just to clear it up lovenox and heparin are NOT the same thing…but they can be used for the same indications and heparin is cheaper.

    What I can’t figure out is why that has to be found out on a blog instead of from the hemotologist? Weird, but then again how awesome is the blogosphere!

  18. Melora says:

    This doesn’t really relate to your question, but I wonder whether your pediatrician suggested that you have your little ones tested for Factor V Leiden? Please forgive the dumb question if I remember incorrectly and that is not your diagnosis. My ped. did suggest I had my kids tested in a few years, as it would be helpful to know if they also had Factor V under certain circumstances. After I was diagnosed, a couple of my relatives got tested and at least one aunt is now on Coumadin as a result.
    Best wished with finding a good solution to your dilemma. Would the birth defect risks be high if you conceived while on Coumadin and switched to Lovenox early in the pregnancy?

  19. Tony says:

    I can’t offer you advice, but I can offer you this:

    Memorare, o piisima Virgo Maria, non esse auditum a saeculo, quemquam ad tua currentem praesidia, tua implorantem auxilia, tua petentem suffragia esse derelicta. Nos tali animati confidentia ad te, Virgo Virginum, Mater, currimus; ad te venimus; coram te gementes peccatores assistimus. Noli, Mater Verbi, verba nostra despicere, sed audi propitia et exaudi.

    Amen.

  20. Jennifer F. says:

    Um…still not getting why heparin and/or lovenox is not an option here?

    Lovenox is insanely expensive and the way the hemo talks about it I thought that heparin is given only through IV. Is there heparin that you can take orally?

  21. Jennifer F. says:

    I wonder whether your pediatrician suggested that you have your little ones tested for Factor V Leiden?

    Good question. Did you mean Factor II? I don’t have Factor V and don’t think my husband does either, so I don’t think there’s a risk of my kids having that. I probably will have them tested for Factor II at some point.

  22. Melora says:

    Sorry, but I did mean Factor V Leiden. I should look more closely through old posts before commenting, I suppose. Factor V Leiden was my diagnosis, tends to run in families, and seems to have some similar symptoms to what you are describing — increased incidence of DVTs, DVTs more likely to form during pregnancy, increased risk of stillbirth or miscarriage due to unborn baby having blot clotting problem, greatly increased likelihood of DVTs if birth control pills are used, etc, etc. I was given heparin in the hospital when I had my DVT and Lovenox during and after my second pregnancy. Anyway, I guess there are probably quite a few blood clotting disorders which might sound similar to a lay person! I feel for you in your dilemma. I had also hoped for a large family, but feel blessed to have the two I have. I think I read in one of your recent posts that you had set up a meeting with your priest to discuss your situation? I hope he can offer you some wise advice!

  23. Chad says:

    Jen, I just browsed through your blog for the first time in a couple of months.

    I’ll keep you in my prayers.

    I’ve taken some pharmacology courses, though it’s been a few years, so take what I say with a grain of salt. There is no oral heparin; it has very poor “bioavailablity”–that is, it can’t make it through your digestive tract and into your bloodstream intact.

    If you haven’t already done this, can you contact one of the NFP centers in your area to recommend either an OB/GYN or an NFP instructor help you understand your “weird cycles”?

  24. eulogos says:

    You have probably found out all this by now, but Lovenox is a low molecular weight heparin. Heparin is much cheaper. Both are given by injection with a small needle. You can easily give yourself these shots just as diabetics give themselves insulin.

    I am just guessing here, but if what is important is NOT crossing the placenta, then a large molecule like heparin would seem to be safer than a smaller molecule like Lovenox.

    I have no idea how these different anticoagulants affect your particular clotting issue. Coumadin and heparin work at different points in the clotting cascade. Aspirin works by making platelets less “sticky” somehow…and I think Plavix has a similar effect. Only a specialist would know which ones would work for you. I hope you have found one by now, and one who won’t harrass you about your moral convictions.

    Seek ye first the kingdom of God, and his righteousness, and all ye ask will be added unto you. Don’t be tempted to compromise. My prayers are with you. At least I have prayed for you now and will as long as I in my weakness remember to do so. I’ll put you in my list of links and that will help me remember.
    Susan Peterson