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!
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!