Any one out there with Blood Disorders?

[EssieJames23]

Hi Ladies!!! I am new here, just signed up tonight. Was looking for a forum just like this - perfect!!!

Two years ago I survived a life-threatening embolism. I immediately thought if I live, please let me have a baby. Well, now i found I have multiple clotting disorders and will be on coumadin for life. I have prothrombin mutations and Lupus Anticoagulant with questioned Antiphospholipid Syndrome.

My doctors are pushing me to get healthy and have children sooner than later if I ever plan on having them. While this is not ideal, I am determined to have children so need to find a viable option. I am a sophomore at university right now (hubby also goes full time and works full time - he will be 29 this year), working towards my masters in occupational therapy.

The doctors say the healthiest and safest time for high riskers is to get pregnant by 25 - that is next year so it raises TONS of questions and concerns i am hoping someone can take the time to reach out to me. The plan is once i get a BFP, see oncologist and be switched to lovenox/heparin and baby aspirin and see high risk fertility specialist biweekly.

If I were to wait until I am finished with school, I'll be 30 when we start ttc!! The best age (according to the doctor) and safest would be early next year right after I get my associates in science ( I will be 25 then ). Now, I can choose to TTC while continuing on to my bachelors, assuming I don't get pregnant right away (we ttc for 6 months last year with no luck). Then I can either hope baby not born until senior year or hope that school has deferment option and lets me take a year off.

Then I need to consider how this will impact us financially, we are just staying afloat now with a teeny bit of wiggle room, but could not afford a bigger place unless we find better jobs with our Associates degrees.

Unfortunately, surrogacy, egg freezing, or IVF are not options as they all require hormone injections which can cause a repeat clot to happen. Then we need to consider if pregnancy is even safe for me - they said with proper monitoring I will be okay, but will still be high risk. I need to talk to more moms with clotting disorders!

Does anyone else have experience with pregnancy with clotting disorders or on lovenox? This is so scary and overwhelming - I have no one to talk to!

So that's me in a big nutshell - I am really hoping for some kind words of wisdom out there right about now! Big hugs and baby dust!!!

 

[k4th]

hun. I didn't want to r&r. I have the opposite problem to you - I have itp & my blood DOESNT clot. Not great for giving birth eh??

So I can't help much with your specific questions about high risk clotting. But - I do have a consultant obstetrician leading my care with input from two haematologists. So from that perspective I can let you know that although I'm high risk, I have the best people involved. The key is to find drs you trust, ask hard questions and if in doubt, request a second opinion. Also, do some research - there is a great journal called "blood" available for free online. https://m.bloodjournal.org

Do your research - know what you want & be your own best advocate. That's the best advice I can offer. Wishing you lots & lots of luck for your journey

 

[KozmikKitten]

Hi there - I, too, did not want to r&r.
I dont have a clotting disorder. At least not that has been discovered yet. I have had many tests taken and nothing has been found.
My son, however, was born with extremely low blood platelets, which affect your ability to clot. (I'm sure you already know that!). It is suspected that he had Neonatal Alloimmune Thrombocytepenia, which we will be testing for officially next month. If so, every future pregnancy we have will also be affected.

Good luck in your TTC journey, I really hope you get that baby soon!

Also, I was able to find a support group on FB which has been extremely helpful. You might try that route, too?

 

[Tasha]

I've not got the same clotting disorder but factor v Leiden. It's resulted in a DVT as well as various losses.

I'm here if you want to talk!

 

[TexasCharlee]

Oh hun, I don't have any words of wisdom as to if you should go ahead and TTC. I think that is something that you and your partner must discuss and decide what is best for your personal situation.

I do have antiphospholipid syndrome... mine is primary as I do not have a any autoimmune problems like lupus that cause the syndrome. I am on once daily baby aspirin and once daily lovenox. I will be switched to heparin twice a day in the last month of pregnancy since it only lasts for 12 hours in the system (lovenox lasts for 24). That way we can do an epidural or a c-section without worrying about blood being too thin.

When you have a blood clotting disorder it does take a medical village to keep a healthy pregnancy, but we have been very blessed to have a proactive and vigilant doctor.

I believe they are saying that it's much easier on your body to be pregnant earlier rather than later because APS can cause a multitude of other pregnancy problems. It does, unfortunately put us at a higher risk for preeclampsia. I was in the hospital two nights ago for high blood pressure. It finally went back down, but I did have protein in my urine, so now they will be watching to see if I develop pre e as well.

I'm 27 years old by the way. While it is scary, I will say I'm still enjoying this pregnancy and feel very blessed. Just take a bit of time to weigh all of your options and decide when the timing is best for you and yours.

 

[Wriggley]

Hi hun I just wanted to say that I fell pregnant with our first boy whilst me and my OH were both studying

I was offered to defer my year but I chose to carry on with my studies and both me and OH graduated on time I attended lectures right til the day I had our son and had 6 weeks off before returning

It was tough but with family support we got through it

So it is possible hun x