POST C-SECTION LYMPHEDEMA...med profs & peeps?......?

ANYONE HAVE IT?....KNOW ANYONE THAT HAS IT? I was third spacing with hypoalbuminemia and SEVERE anasarca my entire pregnancy culminating in my third c-section and with the Anasarca gained over 100 lbs !!!! My second husbands blood type is A+.....I am O+...the baby is A+.....I know....NO RH FACTOR....but a medical professional suggested some sort of insult to my "system" as a whole from the blood type differences??????? I also had pre-eclampsia & 9 months after giving birth my ankles are like clydesdales even though I have lost most of the weight...........HELP! The MD's have NO CLUE.....keep gasping and directing me to clinics where there are 6 month waits to see a specialist. YES....I am A NURSE but am unfamiliar with THIS particular subject. Thank You all so much for any help.......I am so depressed that this may be permanent!!!

Hi....just learned tonite that a vascular surgeon is probably the first step....but looking up "Lymphedema"..........it says.....never goes away....I am so scared....Thank U for your empathy!!!!

You didn't say if the baby had any problems at birth, like a hemolytic disorder. I know that the most famous intereaction is the Rh factor, but there are also disorders associated when the fetal blood is of a different type than the mother, and carries antibodies the mother doesn't have. But those more commonly cause a problem for the baby, not the mother. I have seen one case of something similar to what you are describing, many years ago when I worked L&D. The doctors said she was allergic to pregnancy. When I pressed them further for an explaination, it seemed to me that nobody really had a clue either. It wasn't an allergic response as you would expect to see, but obviously there was something the body didn't like. She also had severe adenopathy, and pre-eclampsia. Her liver enzymes were off the charts, and the internist felt she was at risk for liver or kidney failure. That part sorted itself out shortly after she delivered, but as I recall, she left the hospital still pretty puffed up from the anasarca. She was referred to an internist, and unfortunately I never heard any more after that. But you sound much the same as she did. The doctors all seemed to feel it was a generalized reaction against the pregnancy, and advised her not to repeat it. So it may be the blood difference is enough to set off your immune response. In the days before good prenatal care, I suspect women with your similar problem would not carry them to term, and probably did lose the baby early on. Since the problem would go away in a fairly short time, the rest of the problems just never manifested themselves. I think if I were you I'd just keep at the specialists until somebody came up with a suggestion. If nothing else, perhaps they could try an immune supressant, and see if that wouldn't help matters. Maybe if they calm the immune system, the lymphedema would resolve itself. Good luck- sorry I can't give you more help that this.

edit- I just had another stray thought, after I read your updates and you mentioned you already suffered other autoimmune problems. Look into Angioimmunoblastic Lymphadenopathy with Dysproteinemia. (AILD) is a progressive immune system disorder possibly caused by viral infections, chronic stimulation of immune responses or drug treatments prescribed for other conditions. It's more common in the over 50 set, but that's no reason you couldn't have developed it earlier. NIH has an allergy/immunology section that might be able to come up with some answers for you. Try this link:

Internet: http://www.niaid.nih.gov/

I really think that it is quite likely to be related to the autoimmune response you have already had, and might explain why you reacted to the pregnancy related changes in hormones, etc. I think the baby having a different blood type probably is what set it all in motion. Now the notes I have on the AILD all mention a fine macropapular rash as a most common symptom- and you don't mention having that. Those it might even be hard to spot with severe enough edema, I think. This may not be your trouble, but I would be the farm somebody in the NIH would know more than the average doctor, especially the usual gyn. They just wouldn't run into it often enough to really know what was up. I hadn't even seen or heard of another case until I saw your question on YA, and it brought back the memory. Good luck, and I am glad to hear that at least the baby had a dear face and bare buns, with no other problems than a toe. And who looks at toes anyway? Long as there were five, heaven knows I've seen some odd toes in my career!

I am so sorry this has happened to you. Have you consulted with a circulation specialist or a hematologist? I am not real familar with this syndrome either. I had lymphedema many years ago and a circulation specialist was called in. Hope you feel better soon.

Greetings Terri, I run Lymphland International Lymphedema Online (LILO) support group. Unfortunately doctors have no clue about lymphedema, it's a very understudied area of expertise, lymphologists are the doctors of choice but are so few and far between it's very rare to find one. I highly doubt your blood type and your babies had anything to do with the edema issues. More than likely you were genetically prone to lymphedema and the pregnancy was enough to set it off. Lymphedema is permanent and considered chronic after 3 months but you can get rid of alot of the swelling, heaviness, pain and stop the progression (yes it can be progressive) with therapy. Any one of your doctors can refer you to a lymphedema certified therapist. The therapist will perform what is similiar to a medical massage, it's called complete/complex/combined decongestive therapy, which is manually, gently moving the fluid out of your body. Manual lymph drainage is the bodywork to move the fluid. It feels like a massage and you feel lighter after it and can see a difference. Since the fluid is congesting in your ankles now primarily, they will wrap your ankles maybe legs, then you come back for more therapy for as many days as need to get you the smallest possible,t hen you "graduate" to compression stockings. You will be taught how to do the bodywork yourself, maybe skin brushing maybe not but definitely skin care tips, special exercises to promote lymph flow, and then you will be responsible for your own care at home. It is a lot to grasp at once but the best thing you can do for yourself and your baby is to educate yourself so you know what you need and what to tell your doctor. You have to be extremely careful of infections, bumps, bruises and trauma to your body esp those areas where there is stagnant lymph fluid.

My website is http://www.lymphland.com you can read my profile as well. The link to join my support group is on the front page of the website if you'd like to join.