J.B.
I am not familiar with the blood disorders but this is a good site about managing HELLP: http://www.blueribbonbaby.org/
Best of luck!
HAS ANYONE DELT WITH LOW PLATELET COUNTS AND A BLOOD CLOTTING DISORDER NAMED FACTOR V LEIDEN?..I AM 19 WEEKS PREGANT WITH BOTH CONDITIONS AND THEN SOMETHING ALSO CALLED HELPP SYNDROME...AND ONE OUT THERE THAT CAN INLIGHTEN ME ON THIS??
well im up to 80mg of lovenox 2x a day and i had my gallbladder removed so thats 100% better, however the preterm labor isnt..they are puting in a terbutaline pump in my leg to see if that helps...the baby is growing fine and is bigger in weight then she should be so they said thats a plus!..besides the contractions and dealing with the low platelets and HELLP syndrome were doing ok!!
I am not familiar with the blood disorders but this is a good site about managing HELLP: http://www.blueribbonbaby.org/
Best of luck!
Hi! I don't have factor V leiden or HELPP syndrome but I do have an ongoing condition where I am factor XI deficient. It was found when I was 16 and I was going to have a tonsilectomy (which I never did) I was told that if I were to get pregnant I shouldn't continue the pregnancy for the risk of bleeding during the birth. I am now 23 yrs old and a mother of two with my first pregnancy I was in labor for 56 hours because the rule for no further than 24 hrs was out the window for me because a C-Section & epidural were pretty much not an option the whole time I was in labor I recieved Plasma transfusions to help my blood to clot when I did deliver, with this I had to sign stating the fact that I realized I may contract HIV or HEP C from the transfusions, in the end I did not bleed. So with my second baby (who is now 8 weeks old) I refused transfusions until there was evidence of a bleeding problem. I did not bleed and I did not have to recieve a transfusion. However I do see a hematologist named Dr. Heim I call him the absent minded professor (I think he is just gettin too old LOL) I recommend Adonizio he is in the same practice and he is who cared for me during both labor & deliveries, he was very thorough!! Heres a question did you not have this for your previous children?
Hi, I have not personally been through this, but there is a woman who writes a wonderful blog called "a little pregnant" and she went through it--and her baby was premature at 30 wks--so check out the blog and email her.
yes, I had that when I was pregnant with my daughter. Are you being seen by a hemotologist? after her birth I developed a blot clot on the lung and was on blood thinners for 2 years and was constantly being treated for this and sticky platelet. I also had a miscarriage which can be cause by this and you can also go into premature labor. please talk to your doctor and take care of yourself. keep me posted. I will keep you in my prayers.
Hi C.! Sorry for being late with my response here but I am almost in the same boat as you.
I had HELLP Syndrome with my last pregnancy and it was pretty bad so I can help fill in some of the blanks with that. As far as the Factor V Leiden I am clueless.
With the HELLP Syndrome you should be monitored closely by a perinatologist. You should get more than usual blood work done, urine tests, blood pressure checks, etc. If it becomes a big problem your doctor will need to deliver early as it can be a life threatening disease, not only to you but your child. Not trying to scare you but be up front and truthful.
My last delivery was in '04. I was diagnosed 11/03 however and that is where the doctor dropped the ball and should have delivered right away. With HELLP your platelet count is out of whack, your kidneys and liver also become affected. Monitoring by a peri is key to treatment however.
With HELLP you can experience swelling in your body - hands, feet, ankles, legs and abdomen. Yes some of these are normal pregnancy related symptoms but they go to the extreme. With HELLP your kidneys don't function as they should as well as the liver.
From my own experience my liver was distended across my entire abdomen and I had the upper right quadrant pain. I was leaking protein in my urine and a few other things. The swelling in my legs, ankles and feet was pretty severe and the midwife said that it was 'pitted' - a term she used when she pressed my skin and saw the reaction. Not sure exactly what she meant but knew it wasn't all that good. I had only found out that I had HELLP syndrome after my son was life flighted to Hershey with a hole in his heart. I was told it wasn't due to the HELLP syndrome.
You can go on to have a healthy child in spite of having HELLP though. Bedrest is something that they recommend as well so you are off your feet. Hard to do when you have other children to tend to.
I am currently pregnant with my 7th child (please no flames here) and a very high risk pregnancy because of the last bout of HELLP. I am seeing a peri in Lehigh as well as an OB where I am only allowed to see the doctor, no midwifes or practitioners.
Another thing I recall with HELLP is the doctor was very very adamant about doing an induced delivery because of the blood loss factor. Hard to avoid but they were concerned because my platelet count was off the wall and I might end up needing a transfusion.
Just be sure to take it very easy, stay off of your feet as much as possible and find out what foods are safe to eat. Sometimes certain foods will bring on the swelling. If you have any questions feel free to email me. Just be sure to see a perinatologist and have them take care of you and your child too.
Hi C., I have Factor v and Factor II and I am on coumadin for life, however I was diagnosed 2 years after I had my only child, my sister had a pulminary emblisim (sorry for the spelling) after having her first child which led to me being the oldest , our brother in the middle and then my sister who is the baby - 25 years old, although she was advised no more babies she got pregnant and had to take a couple shots a day of luvenox or heprain.. I was so scared during her pregnancy however she had a healthy son a year ago. she would be great for you to chat with she is up on all this stuff, if you are interested in chating with her I can give you her email or you can give me yours and I will pass it along
Take care of yourself
K. __Mount laurel
I had low platelets and blood clotting while I was pregnant with my first child. I remember having to go to a specialist to get my blood drawn alot in the beginning and then occasionally in the middle and then alot again at the end. In the beginning they gave me a steroid to help with the platelets and so there would not be any clotting, I took myself off it after 2-3 weeks ( I also informed the doctors who were working with me)My conditioned didn't get worse it was actually stablized. They told me that I would have the low platelets for all my pregnancys, but I got pregnant with my son shortly after and my platelets were fine and I didn't have any clotting. There is a big difference between my two kids. My first is a girl and she is small for her age...she is growing really slow...she is behind in her developments/speech, I sortta compare her to a premature baby growing up...but she wasn't premature...but low birth wieght. (But I was never told if her coming out the way she did had to do with my low platelets, they actually didn't know what the cause for he being low birth weight...I didn't smoke or drink)She is 4 years old and she weighs 26 lbs, though she eats like she has a high metabolism. My second child where I didn't have low platelets, that pregnancy was actually normal and healthy, I had a boy and he is 3 years old and weighs 32 lbs. and he is normal, talks more clearly and growing like a monster. Sorry If i just went in different directions with my response. I hope I gave you some info. or help...if not I'm sorry.
D.
Hi C.,
My name is R. and I have Leiden Factor V. This blood disorder has really changed my life.
I was diagnosed after I had my daugher(I had a miscarriage before I had her) after she was born I developed a blood clot from my hip to my ankle, and was told that my child was indeed a miracle. It is very difficult to carry a child to term with this disorder.
I am so happy that your pregnancy is going well, just make sure that your docters are treating you with heprin after birth with a treatment of coumadin(blood thinner) when you go home to make sure that you do not develope clots. I take coumadin every day and will for the rest of my life. Enjoy your pregnancy, it is an awesome time for you!
If you have any more questions, please email me directly at ____@____.com, the disorder we have is very rare, I would love to share more with someone who is like me.
I am a 37 yr. old mother of one beautiful girl.
R.
hello I am also 25 and i had my son last August and I had the helpp syndrome as well i wish i could tell you more about it but i really dont know what it is either. I had the perfect pregncy until the last 3 months i was on bed rest and my blood pressure shot through the roof. The doctors didnt really tell me much about it until after my son was born he was only 4 pounds when he was born. The way the discribed it to me was that all my numbers and counts were out of wack. I hope i am not scaring you i am just letting you knwo what happened to me.
I dont know the specifics, but I do know of people that have had these disorders. To each its own. As you get these responses, you have to realize that these woman have all gone through different things. You could be alot different. I mean, this could be a risk, or you could be just a tad uncomfortable. I know that you are in great hands of god, and the doctors. I am not a holy roller, although I love them too.I will keep you in my thoughts....Big hug to you.
Hi C.! I know this must be a very scary and confusing time right now. But what I would like to tell you is I too have a clotting disorder that resulted in 2 miscarriages and 2 pre term pregnancies. Not to say that eighter of these things at all are going to apply to you. The odds are they won't. Are you on Lovenox since I know Coumadin is not possible usually during Pregnacy or if not how about at least a baby aspirin? Also My sister had H.E.L.L.P. Syndrome. I am also a pediatric R.N. So I do know a little about the conditions you have mentioned. The biggest thing right now is that you are getting good pre-natl care. You should also be seeing a Dr. who specializes in these conditions. A hematoligist and A perinatoligist If you need names of some good ones just message me and I will give you a few. Another important thing is going to be especially as you get further on is that you have frequent visits with your healthcare providers Make sure both your weight gain and blood pressure alomg with Urine dips checking for protein are done frequently. It would be a good idea to purchase one of those electronic home blood pressure kits from the Drug store if you can afford it they run about $30.00. Because these will be the three main things that will first appear if your H.e.L.L.P. syndrome worsens and more things may have to be done. I hope all works out for you. I see you are a single mom but right now it is very important to reach out for help from family and friends. You are going to need to stay off your feet ALOT! I hope I have helped you in some small way. Feel free to e-mail anytime if you want to talk ____@____.com or you can IM me at ang3374. Take care and Good Luck!
~A.
Hi C.--
Congrats on your new pregnancy! I did not have any of these, however, a close friend of mine had the low platelets and blood clotting disorder with all three of her pregnancies. What it meant for her is that she could not have a C-section or an epidural if her numbers were not above a certain point in labor. For two she had to go natural and for one she got the epidural. It just meant they monitored her blood more closely throughout pregnancy and labor. So remember even if someone tells you some horror story, you could just as well be fine when the time comes to deliver the baby since she had both experiences! good luck!
Hi C.,
I was diagnosed with factor V leiden when I was pregnant with my first daughter. It's not a disease, it's the presence of gene passed from one or more of your parents. Most people diagnosed with factor V leiden are herterozygous which means they received the gene from only one parent, I was homozygous, and so got it from both parents. This is a lot more rare, and a lot more risky. From what I have been told, whether or not you have the gene from both parents can greatly change how likely you are to get blood clots, but pregnancy can make you more susceptible either way. I started to get blood clots in my lower calves before I even realized I was pregnant. Since coumadin isn't safe for the fetus, I was given a low molecular weight heparin called Lovenox. These new shots are a bit nicer, because they are easier to regulate, and you can give them to yourself at home--I think with the old style heparin, you have to be admitted to a hospital. Anyway, the biggest problem for us was the expense of the Lovenox shots. We had insurance, but even the co-pay was high enough that we were paying more for the shots than our car payment. Ouch! I don't know how we got through it, except through the grace of God.
That being said, other than the fact that the shots aren't very much fun to take, I was really lucky. The pregnancy went well, I was still able to have a epidural (there's a risk if you've had Lovenox less than 24 hrs before) and my daughter is healthy and normal. I took coumadin for about 6 months after she was born, and as my hormones calmed down, I was able to come off it. I hope that someday we may be able to have another child, but it was only later than I discovered what my complications could have been, so I know my little girl is quite a miracle.
All that said, your experience may be totally different than mine, especially considering your other conditions. I wish I had experience with your other conditions, because I think that's what you need to hear about more. It sounds like you may be in for a rough road ahead. I trust that you have a careful and vigilent doctor--don't be afraid to ask him/her any questions you have, and express any fears you've got. I will keep you in my prayers, and I'm sure there are others on this site who will be doing the same thing.