Tuesday, May 25, 2010

Surgery: Take 2

Had the d&c on Saturday. I seemed to be doing ok over the weekend.

Yesterday though, I started "feeling pregnant" again. I have been pregnant enough to recognize the signs and symptoms by now. Mine first symptom is always heart palpitations. I know, it sounds crazy, but it is my first sign.

So, yesterday I called the doctor to try to explain this to her. She thought I was a total nut job. I asked her to humor me and order another HCG quant. She reluctantly agreed after suggesting that I see my primary care doctor about the palpitations (I am sure she thought about suggesting a psych consult too). I said, "the best it is going to prove is that I am crazy, the worst it will prove is that I am right".

Sure enough, I was right. After the d&c my levels have doubled AGAIN! They called me this morning with the results and told me to head to Cleveland asap for "more testing". She gently suggested that this could be the molar cells and that chemo may be the next option.

I, of coarse, freak out. I called Hal. We drove together up to the hospital. I met with 2 doctors. They immediately repeated the ultrasound. Where they promptly discovered that my uterus has a septum and at the top is neatly divided into 2 halves. The d&c on Saturday removed the "products of conception" from the left side, but not the right. How they have not noticed this on the 100 ultrasounds I have had previously....I have no idea.

Tomorrow I get to go and have ANOTHER d&c.

I actually left the doctor's office happy and in great spirits though. I never thought I would be excited about a botched medical procedure, but it sure beats chemo!

Sunday, May 23, 2010


Surgery went "as well as could be expected". I am feeling ok today. Feeling grateful for my friends and family. Lots of love flowing our way.

Won't find out the details of the pathology report for about 10 days. So, for now. I sit and count my blessings, which are many.

Thursday, May 20, 2010

Damn the moles!

Well....my levels doubled again. They called me in for a repeat u/s today. Turns out I have another molar pregnancy, this one is a complete molar pregnancy. I am devastated. Just crushed. D&c scheduled for Saturday.

They did a chest xray and a boat load of blood work today to try to make sure that the molar cells haven't spread. These cells can cause metastatic cancer. They are not sure if this molar pregnancy was a new pregnancy or whether it was my previous miscarriage regrowing (this would be really bad). After the d&c I will need weekly blood work down until my HCG levels reach zero and then I will need monthly labs after that for the next year. All I can do now is pray (and ask others to pray) that my levels drop quickly and that they don't regrow. If they do, I will have to have chemo. I don't want chemo.

Apparently now my odds of having another molar pregnancy are now 1 in 4. Molar pregnancies are completely unrelated to MTHFR, so this is just something else to battle against.

Tuesday, May 18, 2010

No "evidence"

I went to the doctors yesterday for the ultrasound. They could not find "evidence" of a pregnancy, which is a problem when you are 5.5- 6 weeks pregnant. I left the ultrasound devastated and assumed I had already miscarried. The doctor wanted to follow up with some blood work to make sure my HCG levels were dropping.

4 hours later the doctor calls and says that my HCG levels are continuing to rise, as they would in a healthy pregnancy. My HCG levels are now over 8000!!! One of three things is happening #1) the most likely, I am miscarrying and my body hasn't figured it out yet 2) it is an ectopic pregnancy and they haven't been able to find it yet 3) I am pregnant but not as far along as I think.

This last option KILLS me because it gives me a shred of hope. Hope is dangerous. Logically, I know that I have been through this 3 times already. I know what happens. But that damned hope.

"Hope is the worst of all evils, for it prolongs the torment of man" -Friedrich Nietzsche

So now I get to play my favorite game. Sit and wait. Sit and wait. Sit and wait. Oh and continue to give myself the super duper fun injections into my stomach.

Sunday, May 16, 2010

This gene is a MTHFR

As I sit here on bed rest at 5 weeks pregnant, I am hopeful, scared, bored and lonely. I decided to write this blog to capture my past, present and future battles with recurrent pregnancy loss.

January 2005 while living in Brazil, I became pregnant with my son. He is now 3 (he would add "and a half" here with every ounce of pride that a 3 year old can muster). Simple, easy. I give these details because only in hind sight do I think that something about living there allowed me to get pregnant and carry a healthy baby. Was it diet, caipirinhas, or the Brazilian way of life? Possibly it was it the magical pink dolphins we swam with in the Amazon that are supposed to impregnate the village women? I am still pondering these questions.

In 2008 we became pregnant for the second time. We rejoiced and told EVERYONE. (Lesson #1 learned.) Then at 8 weeks, I began spotting and spotting turned into bleeding and I went to the ER where they said there was no evidence of a pregnancy and it was deemed a blighted ovum.

A few months later we conceived baby #3. At about 6 weeks pregnant, I began having serious pain on my right ovary. Blinding pain. I thought my ovary was going to explode. Those of you with ovaries know that you KNOW when it is your ovary. It isn't indigestion or sciatica, like they tried to convince me. It is a OVARY! I went to the ER. There I met the most horrible of all OBGYNs, Dr. Golden. She ran some blood work and then did an ultrasound where she told me with absolutely no feeling in her voice and without an ounce of concern or compassion that she "highly doubted this was a viable pregnancy" and then she turned around and walked out the room. Not even addressing the searing pain in my side (which was later diagnosed as a bleeding corpus lutem cyst). Although my HCG levels were still fine, the ultrasound was showing an empty sac. The next few weeks were MISERABLE. I think I had 1-2 ultrasounds a week for the next 3 weeks. The doctors could never tell me beyond a shadow of a doubt that the pregnancy wasn't healthy. Each scan revealed a slight change with the fetus. First there was an empty sac, then a small yolk sac, then a "possible" fetal pole. In the end, at 11 weeks gestation, we had a d & c. Super fun. When we went back for our follow up appointment after the "procedure", the doctor informed me that the lab results were showing that I had a partial MOLAR pregnancy (insert the dun-dun from Law & Order).

I dare you to google molar pregancy. Go ahead do it.

The doctor began explaining the follow-up treatment. This included chest x-rays, weekly blood work and waiting a least 6 months before attempting pregnancy again. The worry here is that apparently the "molar" cells can regrow. These rouge cells can multiply and potentially cause CANCER. Yes, it is possible to get cancer from getting pregnant. Who knew? Who the %$# knew?

After getting the go ahead from the physician, we quickly became pregnant with #4. The ultrasounds at 6, 7 and 8 weeks revealed no fetal pole. The pregnancy was once again deemed "not viable". A d&c was scheduled, but the night before I was supposed to go in, I miscarried on my own. I will withhold the details or this. Let's just say 'yuck'.

After the 3rd miscarriage, we decided to seek the advice of a fertility doc. I asked my OB for my records, she copied them and sent me on my way. In the parking lot of the doctor's office, I decided to face my medical records and read about all the crap that has happened. This is when I read through my labs, ultrasound reports, surgical reports, office visit summaries. When reading through these documents, I found a lab report. On the top of this report I saw ***Patient is homozygous for methylenetetrahydrofolate reductase***. This was the first time I had ever heard these words. Needless to say I didn't understand a word of it. I figured must not be important if my doctor hadn't mentioned it. The asterisks on the page did bother me, though.
Met with the fertility doctor. I handed him over my medical records. He asked me to give him 5 minutes to review. He came back in the room after 1 minute and said "I found a problem". He said I have what is commonly called MTHFR. My husband and I laughed out loud. I have been called a lot of things in my life. MTHFR??? Couldn't they have thought of a better acronym?? He looked at me like I was a martian and didn't get the comedy. I gently tried to explain that the acronym was funny, not the diagnosis. Still lost on him. All business this one.
He then explained the implications of the MTHFR.

Go ahead, google that, I double dare you!

MTHFR has a host of super fun implications. Some of my favorites: stroke, heart disease, Alzheimer's, drug addiction, Parkinson's, diabetes, and recurrent pregnancy loss (dun dun).

His suggestion was to 1) follow up with a hematologist to make sure there are no clotting issues 2) immediately begin taking Folgard, 81 mg of aspirin and a prenatal vitamin. 3) once pregnant begin with twice daily shots of Heparin (in the stomach, fun times) and prometrium (Progesterone taken intravaginally, no less).

We found out we were pregnant again at the end of April, 2010. I immediately made an appointment with the fertility doctor to begin with the treatment plan. About a week later, I began spotting. I had an ultrasound at about 5 weeks pregnant and they said there was a "questionable sac". They want to repeat the ultrasound in a week. Now I have been spotting/bleeding for over a week, which is why I am on bed rest, and I am anxiously awaiting the ultrasound scheduled for tomorrow. Fingers crossed. Stay tuned.....