A new day ~ A new diagnosis

Well, I’ve been trying to decide what to say about yesterday’s visit with the new RE. He was knowledgeable, patient, kind, and informative. I felt as if I had been his patient for years. He knew my medical history and had actually READ MY CHART before I got into his office…what a concept! However, the day came with a diagnosis of another genetic disease…

We talked about the twins’ pregnancy and my complications. We talked about my CF and where I am at with that. And then he brought out another diagnosis. One that I had no idea about. One that I got results about a few months ago and the nurse said that everything looked good.

Rewind: Remember that nightmare blood draw that required 21 vials of blood and they had to stick me multiple times just to get the blood? The purpose of having that particular test done was to determine if I had any blood clotting issues. The results I received over the phone were great…according to the nurse, no clotting issues.
Fast forward: When the RE said okay, let’s talk about your Factor V Thrombophilia I looked at him with a twisted look on my face.
Me: What?
RE: I am assuming you have never heard this term before.
Me: (with concern in my voice) No…
RE: Well, your blood work came back identifying a Factor V Leiden mutation. This is a serious blood clotting condition that can lead to risks in pregnancy and can cause strokes. Basically, when you hear of that person on a long airplane flight that has a clot that caused a stroke, that is you.
Me: (dumfounded) What?
RE: You will be given Lovenox for the duration of any pregnancies and you should begin taking aspirin daily.
Me: Could this be the reason for my subchoreonic hemorrhage with Bennett?
RE: (nodding his head with a smile) It is very likely.

Holy cow! So, he talked for a while and seemed to think even with the risks and complications that Factor V causes during pregnancy that we could do our FET anyway. (more on this in a minute)

Then we discussed the quality of the embryos. Our last RE seemed confident that with the remaining 5 embryos we had because they were good quality and we got pregnant with twins the first time around. Our new RE described our situation like this: imagine your embryos are M&M’s. There is an outer shell and an inner cell mass. The outer shell is what will become the placenta and the inner cell mass will become your fetus. The quality of your outer “shell” determines the chance for implantation and the quality of the inner cell mass determines viability. So, our outer shells are just okay, but the insides are good quality. So, if we could get an embryo to defrost and re-expand then implant we have a good chance of becoming pregnant with a viable pregnancy. Seems simple…not really!

We were in his office for an hour. It was great to learn all of this info and I am very grateful that he was so patient with me and all of my questions. However, after my hours of research today about Factor V I have a million more questions.

It is very risky to get pregnant with Factor V. It can cause some VERY serious complications and it requires daily injections of a form of heparin (blood thinner). Basically, after all of my reading I am convinced that my hemorrhage (which is considered an early pregnancy placental abruption) was caused b/c of my Factor V mutation. If we had only known then what we know now… Basically, because I had such a terrible pregnancy the first time I am scared to death of a repeat. If my Factor V caused so many problems the first time around why couldn’t the same happen again…or worse? I am hoping to run into a few stories or blogs that document women with Factor V thrombophilia and their pregnancies. Just more food for thought.

So, what do we do now? We are at a crossroads. It struck me last night that with our 5 remaining embryos we could look into surrogacy. My prayer has always been for us to be parents…not necessarily to carry all of my children. I have always been open to any and all avenues that would end in us being parents. So, logically surrogacy is a very real option and it would be a huge blessing if it were that easy. Unfortunately, none of our options are simple or easy. We have time to talk about this b/c we are still waiting on B’s test results and I have a few more questions for the doctor, but I am ready to make a decision as soon as we hear back from Ambry.

This diagnosis really took the wind out of my sails. I literally got in my car yesterday and just cried. I am tired. I am overwhelmed. I just don’t even feel like myself anymore. Mentally, physically, and emotionally I am just exhausted. However, I know there is a blessing in the works for us. I know in my heart of hearts that we are in the middle of working toward our prayers being answered. So, for now I will just pray. Pray for great results from Brandon’s CF screen and pray that God will bring us peace in making a decision about how to proceed with our embryos. We would be so grateful if you would keep us in your prayers during this difficult time.

TGTIF (thank goodness tomorrow is Friday) I can’t wait to play with Ellie and hang out with our friends Ms. Candy and Rhys! It will be a much needed mental vacation. Happy Friday to everyone!

Blessings,
Angie