5.16.2013

Phone Consult Results and Dr. Hilger's Latest Research

What is it about talking to Dr. Hilgers on the phone that has my heart racing and feeling slightly ill? I think its the combo of talking to such an amazing person and having a short period of time to be coherent about a topic that is not only personal, but very sensitive in nature. If you have two seconds, skip to the last line and get my summary of the phone consult (or paragraphs six and seven if you just want the latest research).

I went into this call differently than most appointments. I didn't think it would be life changing or anything. I just thought it was likely infection and what are we going to do about it? I didn't talk a lot for me. I listened. I didn't have a ton of preconceived ideas. It was relatively simple and straight forward.

I forgot, at first, if I call him or vice versa. I relistened to my voicemail reminder and got no additional information so I called and that was the right thing to do. I offered to recap everything and he said no need as he just went over my chart. I still weaved in the details I thought were important in the recap. What can I say? I am still me-a bit obnoxious that way.

As far as infection, we haven't retried taking the 21 days of Biaxin-we just did 10 days. We haven't taken 14 of Cipro as preventative and let the whole course run before ttc. We haven't gone to NY for full treatment with Dr. Toth (I think he forgot this-not many on our track haven't-we have been to NY for testing, but we were pregnant at the time). I haven't even mustered up the self-discipline to start the antiinflammatory diet (Godiva truffles for lunch). So I guess I feel we still have options, thought I am not convinced we would do any of them. I just don't know. I am not confused. I just have peace. We don't have all the info to decide. We don't have Dr. Hilger's recommendation.

Dr. Hilger's mentioned the infection in that we don't know what we are dealing with. It could be the infection from before is gone and this is something new. It's certainly seems as if its been treated enough. But then again some things are never really gone, just suppressed  So that got me thinking (after the call), what did my cultures from the June surgery show? That is how we learned I had the mycoplasma. I think they came back with nothing. But I want to double check in case this slipped through the cracks. Never hurts. [update-the nurse called before I finished this post-yup, all negatives for cultures this time with PPVI despite crazy inflammation and TEBB-I don't think its gone, but it def can mutate or be whatever so we won't know for sure what we have unless we go to NY] Even if positive, there can be false negatives, or they could not have tested for the infection I have. Hilgers already told me once 20% or so test positive for infection, but 60% respond well to antibiotics so things are missed. Another option, to miss less, would be to go to New York. Instead of for treatment, we could just get tested  and see what we are dealing with. There is no lab in the U.S. as thorough as Dr. Toth's for testing for bugs. Then we could make an informed decision about whether to treat. I want to be healthy and infection free, but its costly so going to NY isn't a total given. That's a lot of money that could be put toward adoption...so we will see. Not enough info to make any decisions.

So Dr. Hilgers wasn't hung up on the infection idea. I think it was an obvious option for what happened and he knew that. But he wanted to explore something else on this call. The idea that we've had four losses and two healthy children made him want to at least rule out genetic testing. He will be having a nurse contact me as to the details, soon since I am on CD 7. [update-by soon he meant soon. The nurse called me during the writing of this post. Basically she said my local ob could order the test and run it wherever since they don't run it locally.] He wants this done on dh and I asap so results might be back by my next cycle review. Its a blood draw that can be done here or mailed to Omaha, but they don't do it there so that may not be necessary. I will see what the nurse says. We have never had this testing done. Its karyotypes both of us to see about genetic abnormalities. The irony of this is this is something typical REs do run, after three miscarriages when you are referred to them, but of course our other stuff would never have been caught or treated with traditional methods. Dr. Hilgers did warn me its expensive, but I have already had my deductible met and dh is well on his way to his so I don't think our 20% coinsurance will be insane. But it does make sense why it is run initially with everything else.

Now, the first thing I thought of was if that is the case, what is a Catholic to do? Any non Hilgers RE would happily do IVF with ICSI under these circumstances to ensure perfect chromosomes. But the brilliant Dr. H has something he has been working on and he is 2 for 2 in terms of successful treatment. (I told him, leave it to me to be in on a research study with that small of a sample size. On our last conference call, he told me about the infection and how he had 3 patients treated so far). If we did have a genetic problem, he is theorizing that the cells around the egg are also abnormal (as seen by ultrasound-only with his ultrasonographers really-no one else in the country is looking for this). Couples that have these problems avoid when the cells are abnormal and try when they are normal. Two for two-trying on normal cell cycles despite challenging genetics and had healthy babies. God bless him. He really is conquering the culture of death in such a tangible way. Incredible. He just presented the results to a conference in NY. So glad he is getting the word out. And for us, going to Omaha for an ultrasound isn't as impossible as it might be for others. Add to this the fact that we have a history of getting pregnant within three cycles, so I am not freaking out about any of this. We will deal with what comes. We will make decisions when we have hard facts.

The other point of concern that I mentioned on the call that was a red flag? I bled five weeks after my miscarriage. five long weeks. I was on top of it with my local ob, almost annoying. But go figure, that wasn't enough.(and God love him, Dr. Snider is napro trained!)  They thought if my hcg went down, I was fine. Dr. Hilgers says there can still be tissue, even if not "active" tissue. Bleeding five weeks is never normal and, though he wouldn't have done an automatic D&C every time to determine I am clean, he would have stepped in an done one at two weeks. Tuck that in the file as info I hope to never need again, but good to know. I asked if I should do a D&C now and he said wait for now sometimes getting the hormones right will be basically a medical D&C. But basically a piece of tissue in there "festering" (my word) is never a good thing. Sigh.

So the call was short and simple. Twenty minutes. We are going to rule out genetics. We will deal with that if I have it. If not, we will talk more about infection and possible next steps.

11 comments:

E said...

Wow, so thorough. God Bless Dr. H! The u/s sounds so interesting. Also, have you been worked up for MTFHR?

I hate infection. Just sayin. But if you go to NYC, maybe we could take the train and meet up. I have that city. ;)

WheelbarrowRider said...

E, yes I had a clotting panel done with my previous OB where we discovered the Factor V. I only have one gene, so that isn't a big deal and dr. Hilgers called it a non-factor. I am on baby aspirin daily. I am glad you asked though, any ideas are welcome! I didn't know you were close to NY! I totally want to meet bloggers, but dh is/was skeptical (he knows he is hyper paranoid). I think he is getting better and if it comes to us visiting I will def keep pushing him to expand his comfort zone!

Kaitlin @ More Like Mary said...

Wow! He is so wonderful. Such a gift!

JellyBelly said...

He is such a wonderful man! We are so blessed that he has this wonderful vocation!

JellyBelly said...
This comment has been removed by the author.
polkadot said...

Fascinating theory about the abnormal cells around the egg! Dr. H never ceases to amaze me.

Oh, and blogger meetings are the best! My husband was a tiny bit skeptical too, but meeting my first blogger at a CrMS conference (TCIE) helped ease his mind a little. :)

Hafsa said...

God bless Dr. Hilgers for what he is doing to improve a woman's reproductive health when others are unwilling.

All in His Perfect Timing said...

Just when you think that you're at the end of treatment options, Dr. H has more options up his sleeve! I'm glad he's not giving up and has had successful treatment with abnormal cells! Prayers for your discernment on treatment ahead!

Alive in HOPE! said...

"What is it about talking to Dr. Hilgers on the phone that has my heart racing and feeling slightly ill? I think its the combo of talking to such an amazing person and having a short period of time to be coherent about a topic that is not only personal, but very sensitive in nature."

Couldn't help but smile reading this, my friend. You totally know how much I talk, especially when I'm nervous. Now picture poor Dr. H having to put up with me... God love him! ;)

And GOD BLESS YOU!!

Jasmine said...

Sorry it's been forever! I have been checking up on you via your blog. I am glad you aren't jumping at the bit to visit Dr. Toth. I still haven't recovered fully from my 2nd round. But your info on the abnormal cells was really helpful. I have a client who lost two due to heart defects and possible Trisomy problems. But the first two pregnancies resulted in two healthy children! But the last two she's found out at an US about 15 weeks, that the babies will die in utero, and she's had to deliver two girls who died in utero at about 21 weeks. So tragic. With this last one we waited until cycles looked healthier on her charting, but of course she has a wacky one here or there, and she conceived her last one the cycle after the wacky..so I worry about previous hormonal issues effecting the next cycle's ovulation quality. Anyway, thanks again. That info was helpful. I will investigate more and share. And I'll keep you in my prayers!

WheelbarrowRider said...

Jasmine, I no longer have your email due to the spammer, but I would love to hear from you!