Saturday, September 19, 2009

My trip to the specialist - Part I

A basket case. That’s what I was for weeks thinking about my appointment with the reproductive endocrinologist in Chicago. What would she be like? What questions would she ask me? Would I be able to answer her questions? Would she be able to help us?

I drove three hours from my home in Madison, WI to downtown Chicago. I have no inner compass and was nervous about finding the hospital. My GPS, bless her heart, tried to help me but she couldn’t see the roads closed for construction around the clinic. I finally spotted the parking garage. I was already running late, which exacerbated my anxiety. I traveled through every level of that parking garage. There wasn't a single available space. I left the garage and was directed by the gate attendant to the valet parking. Grateful, I got the car parked and headed in the clinic. I was running late. I didn't know where I was going, who I was looking for, or which set of elevators to get on. I did have a floor number. I finally made it to the right department and waited a few minutes before being called back (I guess there is an advantage to being late). I lugged my bag carrying all 200+-pages of my medical file, along with a two-page summary I compiled the night before of my seven pregnancies. I sat down with the nurse, who was perturbed that I hadn’t answered her phone calls. She had called me at work to touch base before my appointment. I had left my house at 7 a.m. and didn’t know she was trying to reach me. She consulted the treatment summary from my doctor, but hadn’t received my full medical records. I answered personal questions about my sex life, what diseases exist in my family, and whether I have any relatives from Canada. We then went through each of my pregnancies in detail. The summary turned out to be the best thing I could have done. Without it, I would probably still be sitting with the nurse.

I highly recommend to anyone going through medical treatment to get a comprehensive list of both sides of your family history. You'll never know when you'll need to know if your husband's paternal grandmother had arthritis.

I was weighed and pressurized and then taken back to meet with the doctor. The room I was taken to was tiny, cramped, with an examining chair that reminded me of my times in the hospital being prepped for a procedure. I chose to stand. I waited about five minutes, passing the time by watching the construction activity going on next to the hospital. The doctor came in and escorted me to another tiny, cramped room, this one with a desk rather than a examining chair. She asked me if I had any ideas about what was going on with my situation. It’s not often I’m asked a question I can’t answer; this one truly stumped me. I told her I hoped she could provide her opinion on what was going on and that I wasn’t sure there was anything else to be found. She asked me questions about my pregnancy history, medications, and test results. She was interested in every detail. Some of her questions were easy to answer. Were all my babies with my current husband? Yes. Did I have trouble conceiving? No. At what points during the pregnancies did the babies die? I knew that by heart. Other questions weren’t so easy. Had I been tested for cystic fibrosis? Not sure. Was I confident about the chromosome test results from the second baby? I don't know - why wouldn’t I be?

So many questions about such difficult experiences. What did all of this mean? What was she thinking? Did she know what was wrong with me? After about 20 minutes, she pulled out a piece of paper and wrote her recommendations. I needed more blood work (a lot of blood work) to see if I really have antiphospholipid syndrome (blood clotting disorder). I was tested for this once in 2004 and had been treated for it throughout my pregnancies. I needed to have the tests repeated. Since I had a living child, the results could now be completely different. Didn’t I know that? No. I needed an endometrial biopsy to see if I have a luteal phase deficiency. This would mean treatment with progesterone. Couldn’t I just have the treatment without the pain and expense of another procedure? No, the dosing must be accurate. Due to my extensive use of Heparin (a blood thinner) in five of my pregnancies, I needed to have a bone density scan. Did I know that Heparin affects bone density? I don’t remember being told that, but I must have been. Osteoporosis runs in my family. Could I be at a higher risk of having bone damage now? Had I taken this drug to save my babies, and destroyed myself in the process?

There was so much information. So much to think about. So much to do. It eventually became too much, and I did what I had prayed I wouldn't. I broke down.

To be continued…


Anonymous said...


Yes...I remember the 20 (million) questions first appointment. And reliving all of my losses. Not fun. :(

Christa said...

My heart goes out to you Cynthia, you have been through hell and back. You clearly needed to break down, it's ok. It's so much information, and so much confusion at once. I'm being sent to a hematologist for further antiphosipilid testing as well. They realized that some of my levels are off and made the correlation. It may not solve my problem, but at least they are trying. And it seems for you, that they are trying too. Sorry you have to do the biopsy, it's not a fun test I've heard. But I know you can do've come this far right?

Stay strong, and let us know how things progress ((BIG HUG))

Noelle said...

I am so sorry that it was stressful you. And it is completely understandable that you broke down. I can't wait to hear the rest of your story.

The Blue Sparrow said...

Yes I agree it was a totally understandable and probably much needed breakdown. Reliving the memories of loosing our babies and then going over in every small detail of how our bodies betrayed us is exchruciating! I would have broke down long befor that, you were very strong! Hugs!

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