Musings of a Marfan Mom

Marfan: The Gift That Keeps on Giving

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I had nasty swelling with both pregnancies. It took two months for it to disappear after the Menininho was born, but I apparently had pre-eclampsia after delivery, so it made sense that it would take awhile for the swelling to go down.

This time, I was amazed at how gorgeous (I use the term very loosely) my feet looked a few days after delivery. The nurses would say “aww, you’ve got a bit of swelling!” and I’d say “No this is great! It’s almost all gone!” I mean, swelling started at 18 weeks with Baby J, so finally having toes that didn’t look like cocktail wieners was bliss!

That bliss was short lived. A week after delivery my feet were back to pre-delivery levels of swelling and a few days after that they were even worse. I couldn’t even fit into my flip flops! I worried about pre-eclampsia again, so I made an appt. back to the OB clinic. Pre-e tests were negative and I was told the swelling was normal. My cardiologist offered lasix, but I declined. The next time I saw him though nothing had changed and he insisted I take some. Unfortunately, it didn’t help and my doctor warned me that the swelling might be permanent. Apparently Marfan can cause our veins to become insufficient after an event like pregnancy. Not that it would have affected my decision to get pregnant, but that would have been good information to know ahead of time!

My camera doesn't do them justice: they're MUCH sexier in person!


On Monday of this week my GP put in a referral to the lymphedema clinic and surprisingly they were able to fit me in yesterday!

This is where I take a break to brag on my hospital.
1) No one batted an eye at me nursing in the waiting room.
2) One of the nurses offered to put cartoons on for M. to watch (even though I’m sure she would have rather watched Rachel Ray). He loved it!
3) Two doctors offered to hold the baby when I couldn’t so he wouldn’t have to lay in his carseat in the stroller.
4) The doctors brought M. a stuffed elephant to play with during the appointment and then TAKE HOME with him.

I had been so nervous about taking both the boys out to my doctor appointment without an extra set of hands. I REALLY appreciated how kind everyone at the clinic was. The cardiac team actually does treat their patients like family…one of the nurses was even reminiscing about how she first met M. was he was J’s age and ohmygoodness how is he going to be TWO already, hahaha.

Aaaaaanyway, after a thorough exam the lymphedema specialist told me that I do, in fact, have lymphedema (as opposed to hydrostatic swelling, which is what women get during pregnancy & what lasix can treat). It’s partially caused by Marfan and probably has some genetic predisposition from my mom’s side as well, as she and her mom both got lymphedema after radiation for their breast cancers. The doctor said normally lymphedema can’t be cured but he feels cautiously optimistic that mine can be, since it was brought on by pregnancy and is still pretty early. I’m supposed to have 5-10 sessions of physical therapy and if that doesn’t work then we’ll know this is permanent. Unfortunately, the PT doesn’t start for a month.

In the meanwhile? I’m just happy to be cutting my daily number of pills in half! I’m also hoping removing the lasix will allow me to go a whole night w/o having to pee, which isn’t something I’ve done since oh, last April.

Moral of the story? If you other Marfan Moms have swelling that lingers for more than week or so after delivery, go see your doctor sooner rather than later!

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11 Comments

  1. Oh Maya, so sorry. I had horrible swelling after each of my births, but it went away after a couple weeks. It was miserable! Hope you get some relief!

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    marfmom Reply:

    Thanks. I’m praying it goes away, partly because my feet and ankles are so sore and partly b/c it’s hard enough for me to find shoes without having to get rid of the few I currently own and start over. The only pair that fit are my flip flops.

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  2. I took Lasix for years. It didn’t work very well for me, then got so it wouldn’t work at all, my feet were swollen all the time. There are other drugs that may work. I now take TORSEMIDE 20mg twice a day. When I was on Lasix they kept upping the dosage, but didn’t have any effect on the swelling. (Torsemide is generic for Demadex).
    Hope it goes away very soon.

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    marfmom Reply:

    From what the specialist said, it sounds like diuretics don’t work for true lymphedema at all. It had something to do with how protein is processed through the lymph nodes. I’m wondering how many of us are on diuretics that aren’t working. Apparently they’re supposed to be short term medications? Is Torsemide a diuretic or a different kind of medication? I have not heard of it. Thanks!

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  3. Prayers, hugs, and love dearest. Love those feet. Guess the foot fold is hard to do now.

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  4. Oh the things it would be nice to know about beforehand. For me it was the pelvic prolapse. The doctors thought it could happen but didn’t mention it to me. I really hope the PT works for you Maya!

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  5. Oh Maya I am sorry! I hope everything turns out ok. Diuretics do not work on Lymphedema…I won’t spill my knowledge about that on here in case it is wrong, but they have some good treatments that can help with the swelling. I hope they work on you and it goes away!

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    marfmom Reply:

    I’m going to be doing PT at a hospital you’re quite familiar with. I heard there is a type of massage they can do that will help. My fingers are crossed! :)

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  6. I believe Torsemide is a diuretic. It’s also used to lower high blood pressure and help edema. One other thing I learned about Lasix AFTER changing doctors, it is intended to work for just 6 hours (hense the name (last six). And my doc had been upping the dosage to be taken all at once instead of a dose every 6 hours which would make more sense. In 2009 when they finally got hold of me at OSU and put me in the hospital, they got me off the lasix and started the new drug by IV and I peed out 45 pounds of excess water in 10 days. I had NO idea I was holding that, but I knew I felt lousy!!

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  7. So sorry about the swelling and I hope it goes away with treatment. I have to add though, that I am very jealous of your beautiful Marfan feet and and all your toes that are straight and go in the right direction.

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  8. You do not know how comforting it is to read your posts. I know that some of this stuff is less than pleasant, and I really hope this clears up with your therapy appointments. But the fact that you warn the rest of us what to watch out for is so giving. If you didn’t, I probably wouldn’t know to watch out for this either.

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