Monday, November 3, 2008

Results are in (mostly) and more waiting.........

Well, the results are in and my testing came back that I have some type of thrombophilia. However all the tests are not back yet. My doctor wants to push me into another cycle using Heparin (blood thinner) injections twice daily - which mind you would continue for 8 MONTHS if i get pregnant.

So this thrombophilia makes me more prone to clotting which means that is probably the reason my little embryos won't implant correctly - which the heparin would supposedly fix. However - pregnancy is a "pro-thrombotic" state anyway - meaning that anyone is more prone to clotting when they are pregnant, even without thrombophilia. Now, the question I pose to my doctor is WHY would I want to enter a pro-thrombotic state such as pregnancy if I am already pro-thrombotic??? He says "don't worry about it, you'll be on heparin - no problem."

He can't understand my worry. Maybe as a nurse I've seen too much. I have seen people die from pulmonary embolus (blood clot to the lungs) which is the #1 worry. I've also seen people die from bleeding to death from heparin.

So you see my dilemma..........

Anyway - I'm not making any decisions now. I want a second opinion from an actual hematologist, an expert per se. I have an appt with hematology later this month after all my results are in to discuss with this expert physician (who mind you will NOT benefit monetarily from my next cycle.....) to see if he thinks it would be too risky to try and get pregnant. Not that I think my doctor would risk my life to make money.....but the truth is that I work in healthcare.....physicians do get upset when their patients die. But you know what??? When a patient dies, they say "man, that's too bad, I feel horrible, I wish things were different, yada yada yada......" and they MOVE ON to the next patient. So, truthfully, it wouldn't matter that much to him if I died. I am just another patient. That sounds cold - but that's reality.

I HAVE TO STAND UP FOR MYSELF AND BE MY OWN VOICE.

So - the funny thing is, that I am at peace with possibly not doing another cycle and moving on to adoption, etc..... I've always wanted to adopt anyway, even if I could carry a baby.....and this situation has made me realize that I don't want to die. I want to live and raise a family and be an old grandmother with lots of grandkids running around. I don't want to be the heroic 32 year old that died trying to get pregnant. I'd rather be the old grandmother who adopted a bunch of kids and gave them the most loving home possible and is now rewarded with a house full of beautiful grandkids.

I will keep my mind open though in case the hemotologist says the risk is minimal and I should try another cycle. BUT - if he says there is increased risk (and as my infertility doctor says: "all pregnancies are risky anyway"), I will peacefully give up fertility treatments and either search for a surrogate to carry my frozen embryo's, or donate my embryos ----- or adopt, which again I want to do someday anyway.

So, that is what I know for now.
More waiting.

7 comments:

Chelle said...

I TOTALLY agree with getting a second opinion! Good for you. Here you are trusting your life with this person (and they are ONLY human) and they want you to put your body through all this and just be okay with it... I DON'T THINK SO!

I trust my RE, obviously, but I think that we also need to realize that he is working.. doing his job... and will go home at the end of the day... and get his paycheck... just like everyone else.

I'm jumping off the soap box now!

Anyway, I think you have a wonderful outlook. Again, good for you.

Io said...

Ack. I am so behind in blog-reading.
I have no medical knowledge beyond if I cut myself I bleed, so I have nothing to say about the heparin, other than if you are not comfortable with it, than you shouldn't do it. Especially after what you've seen.

I am sorry about the results.

xo

Monica H said...

Hi Shauna!

Thanks for visiting my blog and thinking I'm your hero even if it's momentarily. That completely made my day :-)

I just get aggravated by the hypocracy of people...and the fact that everyone has an opinion that they're entitled to, but they judge people who have differing outlooks- whatever! And the funny thing is, I know who the anonymous commenter was- ha!
__________________________________

Okay, back to you...I think it's very wise to seek a second opinion. And thank you for being honest about what doctors really think about when a patient dies. When my second pregnancy was failing at about 15 weeks (the baby was completely healthy and fine, but my cervix was dilating) my doctor just said, "well, on the next pregnancy..." as if my current pregnancy, my baby!, was already over, and didn't even matter.

It's because of that comment that I switched doctors and practices. She seemed genuinely upset for about 1.5 seconds then she moved on. I still haven't.

I hope you receive better news from your appt. later on in the month.

Take care,
Monica

Monica H said...

I have a stone for you, but I need your address!

Monica

la said...

shauna, i can comment from 2 angles: i have had failed IVF twice and i am training as a hematologist: as a patient, i feel your frustration, do get a second opinion if u haven't already; as a physician, i will tell u that many docs are not as insensitive as u think...i often think about patients i have lost; from a hematology angle, many pts have had successful pregnancies on heparin whether they r on it for fertility issues or other reasons: coumadin is contraindicated in pregnancy, thus the heparin..i am planning to go through with the third ivf before moving to adoption; i am also at peace with this as u are...best of luck, prayers r with u..

benedicteggs said...

Over here from LCFA.

I just wanted to chime in and say "good for you" for making a place for your own care in all of this.

I am thrombophilic as well, although I am one of the "undefined" patients whose proteins all seem to be in order. I just seem to like to clot - My doctor calls what I have "the Tally factor" because they have no idea why I clot so well.

My RE was very reticent to treat me due to my complex health history (PE, DVT, obesity), but the haematologist set my mind at ease. We have decided to continue to pursue biologically related children at this point, but that mostly has to do with the fact that we aren't at peace with the possibility of adoption. Perhaps someday we'll get there...

Anyway, I wish you luck in your decision making process. And I must say I am rather in awe of people who do find that sense of peace as they go through this process. Pure awe.

Take care! -Tally

And so it goes (AshaAnn) said...
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