And It All Comes Rushing Back

Sick and twisted girl that I am, dropped by the records department for the hospital/clinic to see what I was missing so I wouldn't have to pay $20 for getting a whole lot of chicken scratch. I've got most of the information already and just wanted the bits that I was missing. Instead what happened was that I got to sit around with my file and relive the first miscarriage and my surgery. How I was able to stand w/o dizziness after the first d&c (they check this stuff for patient release post procedure); how I was "pleasant", walking around, or having "tea colored" urine after my surgery. All these details came into sharp focus in my mind again: the color of the tile floor, calling for help with the PCA pump, sitting on the toilet trying to pee and having nothing come out after they first took out the catheter and the anxious voices behind the door. All the little notes they made, the nurses and doctors and patholgist too, and I felt like I was swimming in memories that my mind had put away for safe keeping, or rather to protect me from them. While I walked quickly and confidently to the office building after work, after picking through the file I left in a daze. And even more frustrating is that there isn't really any good information to be had from my second m/c. There was no pathology done, just blood work and some scans. I felt partly like there might be answers in that thick file and partly that it was sad that there weren't.

On the way home I dropped by to visit my friend, the one who was close to divorce a few months ago (and had a miscarriage a year ago). She's been diagnosed as bi-polar and is on lithium now. She's having a bit of a hard time adjusting to the meds and finally some of the mania she was experiencing is starting to dissolve and so she can remember things a little clearer. We talked a bit about how crazy it was that it was four years later and I was still talking about TTC. For now babymaking plans are totally on hold until they figure out which end is up.

Baby Steps

I bit the bullet today and scheduled an initial consult with my RE (the RE who did my surgery and helped me through 1-1/2 miscarriages). We're going to see if we can stick with her, recognizing her limitations but also the leverage we have with her and her staff.

I set up an initial consult with her since we never had one with her. I just ended up in her care after my previous RE left the clinic and trusted her with my surgery and that's where it was left off. I sort of feel like let's start over with all this and see where that gets us. Yes, I have lots of information and opinions but we also want to know her take.

I think I mentioned before, but the plan that was laid out for us by more then one RE was:

1. Have surgery to remove fibroid
2. After healing (3 months), try on our own for three cycles or so
3. If not pg then move onto Clomid/IUI for three cycles
4. If not pg then consider moving onto IVF (possibly with ICSI -- though with the SPA test his sperm performed really well so this shouldn't be an issue)

We were going to do a trial of Clomid/IUI in July '04 but then got pg and had the firsst m/c. Then we started TTC again after my surgery and retained tissue experience in Feb '05 only to get pg the third cycle and then lose that one as well. It's like we never get to go to the next step. Sharing it with you guys just reminds me of the feeling I had with each loss that maybe God was trying to tell me something -- it's so hard to know that though.

My appointment is scheduled for February 14th - Valentine's Day. I know that's a bit of a downer but at the same time it fits in really perfectly with my cycle -- so if we don't get pg this cycle (and chances are we won't based on our past lack of success) then AF is due right about then and there will be time to either get right into a Clomid cycle or do the HCG or both. There's a chance we might change the appt so to not ruin v-day but for now that's where it stands.

I also just set up a time to review my medical records so I can pick out the sections that I need for my files, which can supplements the ones I already have so I can transfer the files to my RE's new clinic.

One step at a time, right?

Requesting Patient Medical Records

It's a good thing to keep a copy of all your records, particularly when you are dealing with an ongoing condition (but generally as well). Request the records be sent to you if you are switching practices as well and then you can bring copies of the records to each new doctor you see --- you will be better informed and it will cost less too.

Some doctors are very strange about not giving you access to your records, they are actually required to do it under the Federal HIPAA law. You have to make a formal written request, and you need to specify both the time period and sometimes even the specific test results/appointments/etc. you are looking for. They have the right to charge you a reasonable fee. (See HIPAA and Medical Record Copy Charges

Here's a great site from the Health Information Management Association about Creating a Personal Health Record with some excerpt below.

Your Rights Under HIPAA:

Right to access, inspect, and copy health information
Right to request correction or amend health information
Right to request accounting of disclosures of health information—who has received it

Accessing Your Health Records
You have the right to access your health records. You may view or receive copies of your records, or instead request a summary of the information. If you receive copies of your records, the office holding the records has the right to charge you the cost of making the copies. You may have to submit a written request to view or receive copies, so the office has a record of your request.

You also have the right to request that changes be made to your health record. If you believe that information in your record is incomplete or incorrect, you can request an amendment.

Amendments can be requested by either contacting the person who made the entry (such as your doctor) or by contacting your healthcare organization's health information management professional. If your request for an amendment is denied you may still request that your request for a change be kept with the record and given to anyone who requests a copy of your health information.


Here's another link that you also might read to help bolster your confidence as a health care consumer if you are having surgery:

Quick Tips -- When Getting Medical Tests

How does one find a fibroid specialist?

I agree, it is a difficult process. Most of the hospitals and clinics around here in the Seattle don't include very substantial information on their doctor profile pages about their expertise. Since OB/Gyn training and practice revolves around surgeries for multiple conditions I think they don't differentiate between procudures. But we as patients desiring uterus saving procedures know that there is a complexity here with the issues of blood loss, adhesions, retaining fertility, etc. that make us want someone who is passionate and fully vested in the outcome of our procedures.

I recently reread Sex, Lies and the Truth About Uterine Fibroids
and in it Carla mentions that some states have databases tracking medical procedures. Here is one of the examples mentioned in the book:

Center for Medical Consumers (NY)

Not all states track this information that it could even be published, that's another place where we need to weigh in and try to get our state legislators to help get us better information.

That said, it still seems like it is hard to find a doctor. There used to be a site that would allow patients to rate their doctors on a variety of criteria but I believe that was bought out by WebMD and it doesn't include that information anymore. Here are links to some directories that might be useful:

uterinefibroids Board Physician Database
Contains names of doctors that have been mentioned in the messages posted to this list with the number of the message to refer to -- inclusion in the database does not qualify as an endorsements of any of the practitioners however.

American College of Obstetrics and Gynecologists Physician Directory

WebMD Physician Directory

AMA Physician Select

You can also find out about licensed doctors in your state by visiting the state medical board web site; do a search to find the link.

The American Society of Reproductive Medicine has a page with links to a few other directories on it....

AMSR: Find a Doctor

MEDICAL RECORDS
Oh, and while we are on the subject, make sure that you request and keep copies of all of your records from the various doctors you see. You can then make copies to take with you if you confer with multiple care providers and it is helpful to be able to refer to them as well. Each State determines how much the clinic is allowed to charge for copies of the records but it seems to average around 75 cent to a dollar per page in my experience. To keep costs down just request the most relevant test results but you may want to have copies of all the chart notes as well. Each clinic will have a slightly different process for requesting records, sometimes a form or sometimes just a letter will do, and most of the ones I've been in contact with accept faxes.