Wednesday, June 17, 2009

Jam-packed day, with a surprising twist!

Yesterday was quite the day!

My doctor's appointment was nerve-wracking, good, draining and uplifting, all wrapped into one. I was so scared going in, which isn't like me lately. I was a mess.

So then I learned everything I posted about yesterday.

To answer some of your questions about the blood clotting disorder - my doctor said the test, which his office does all the time for women with recurrent miscarriage and/or family history, costs around $900, and that is for the whole panel. He made it sound like you couldn't just test for MTHFR. Have some of you done this? He said the only time insurance covers the test is after three miscarriages, or sometimes after one or two if you can prove there's family history of it, such as clots, strokes, etc. (of which I have none). He also said that even if I tested positive, that he'd treat me with baby aspirin and folic acid, so he told me I can just start taking it now. His theory is why spend money on the test (which I could never afford anyways) to find out I'm positive, only to treat it the same way? And as for the other methods of treatments, I didn't ask him about them specifically, but he uses folic acid and baby aspirin at his office so I guess that's what I'm going to do for now. Actually, I'm not sure I should bother starting it prior to having surgery.

In the end, he really thinks we're barking up the wrong tree with this, but knows it can't hurt to just go ahead and treat it, so we are. I think he's right (which surprised me, actually). I mean, I have SO much else wrong with me still. It's not like I have unexplained infertility or anything. Maybe after we treat everything else (possible endo, adhesions, etc.), we can start to look to other possible issues. I have prayed and prayed about this for months now, and I feel confident that treating it this way is the right thing to do. We're not ignoring it, but I'm also not spending tons of money on something that might not even be my problem either.

As for surgery, I feel good about it. As good as one can feel about surgery. I just have to have the attitude that it needs to be done, it's going to happen and I'll get through it. For me, the worst part about surgery is worrying that I'll wake up to bad news. That's what happened the first time (that I had stage IV endo and I'd need to come back for a second, open, surgery).

I'm going in for a surgical consult type of appointment in three weeks (the whole process could have been sped up if I could have spoken briefly with the surgeon yesterday like my doctor wanted, but she was busy...oh well). Hopefully, I can then schedule the surgery for sometime in August. My doctor made it sound like I would have it this summer, so I assume it could happen that fast.

After my appointment, we had a quick lunch (in record time - like 29 minutes) at Ryan's favorite restaurant in D.C. Then, we made our way to the National Shrine. We had a great, albeit brief, visit. I had never been there just to look around and pray. Every time we've gone in the past it was for the Mass for Life and there were like 40,000 people there! Not exactly a good time to really experience all it has to offer. This time it was empty and so peaceful. The Marian shrines are just so breathtakingly beautiful! We split up and walked around separately, with Ryan looking for a place to pray (if you remember, we went so he could ask Our Lady to intercede for him to become a father). It ended up that he prayed at the very same shrine that I felt the most moved by as well - Our Lady of Perpetual Help. And, it turns out, we recently were given an image of Our Lady of Perpetual Help by GIMH and her husband, when Ryan became Catholic. It hangs in our living room and we love it, so it is fitting that this is the shrine that spoke to us most.

After the shrine, we headed to Baltimore for the Mets/Orioles game. A friend of Ryan's got us tickets and we had no idea where they'd be. We knew they might be good when we were sent to a special will-call window for those who have gotten tickets from players, umpires and employees. So our tickets said S07, row 1, so we walked down to section 7 and tried to find our seats. But something just wasn't right - there was no row 1, but there was a row A. So I asked an usher and it turned out our seats were in a SUITE! Like a luxury box! That's what the 'S' meant. We were in complete shock. For a night, we got to see how the other half lives and it was SWEET!!

We were a little shocked

Our view

The private bathroom - one of the highlights for me!

Mets win!!!!

For about three or four innings it was just us in the suite and so we took our share of dumb pictures.

We didn't want to leave!

I still can't believe we were in a suite. I know it might sound silly to some, but I freak out when I get good seats down below, and have spent most of my baseball-watching-days in the upper deck. I never thought I'd be in a situation like this, so I was like a little kid! Now I hope I'm not too spoiled!

It really was a great day, and I'm so thankful for all of it. We had an informative appointment (and left with a plan, just like I wanted), a great lunch, some beautiful prayer time, and an amazing and unexpected experience at a baseball game. It was definitely better than I could have imagined!


  1. I am so sorry about my last comment. I wasn't trying to override your doctor. I just remember my dr. telling me there were 3 critical vitamins that turn into something that are supposed to not clot the blood. b6,b12, & folic all work together.....But then I don't know much on it.

    I love the shrine! You suite was AWESOME!!

  2. Sew - Oh no, don't worry! I didn't mean to sound like I thought everyone was trying to override my doctor. Not at all! I just wanted to explain it all, because even I was surprised I was okay with it! I just feel right about it, so I think that it possibly might mean either a) I don't have it, or b) this is what I'm supposed to take for it for the time being. I guess I just came to the realization that I have prayed about it for so many months, that now I just have to trust. But that is not to say I won't push more in the future if I feel called to!

    Now I'm gonna go edit my post to make sure I don't sound like that! Haha!

  3. I'm glad that your dr is willing to take you concern into account regarding MTHFR and is going to be letting you treat as if you had it (and is saving you some money).

    I'm glad you had such a great day. It's quite cool that you were moved so much by the same shrine. The suite looks awesome too.

  4. So, K--the Shrine is one of my all time places to be. Whenever I visit my dear friend Ann and her family in DC I just can't get enough of it. We usually go and just walk around for SO long, praying in the different chapels.
    When things slow down with school I'm planning on heading to DC for a visit. I don' tknow how far it is from you, but I would so love to meet you. My friend lives in Rockville, MD, where Jeremiah lives!

    I pray that you're well!!

  5. Shannon - No, it's not far at all (hour and a half) so PLEASE let me know the next time you are in town! And we should visit the shrine together!

  6. Yay! So glad that your day was great. I don't think you could have packed much more into it. And I'm glad that the Mets won! :)

  7. I am in love with Our Lady of Perpetual Hope! I consider her me and my husband's patroness since she is ALWAYS around us-at every parish we go to, she is there. When we were in Rome, we even stumbled upon the Church where the original is (which is impressive because there's over 400 churches in Rome!). You're suite looked amazing! We got tickets like that once for a Redskins game and we had so much fun! The tickets were donated pastor of my parish back in MD, but then he couldn't go, so I got them. It is something to see how some people live!

  8. Your pictures are beautiful! I'm so glad you guys had such a fun-filled day! Seriously, Ryan couldn't have picked a better spot to pray! :)

    I love the pics of you guys lounging in your suite! That is awesome! I'm glad you had a great time watching your winning team!

  9. that's so cool that you had a suite! i struggle with watching baseball (much to the dismay of mr. jb). perhaps having special seats like you had would make it more interesting!!!

    p.s. i was the most excited about the private washroom!

  10. Bathrooms are a high priority for me also.

    Glad to hear you got a direction from your doctor and you have a plan going forward. Treating for the MTHFR without the expensive test sounds so sensible I can't believe a doctor proposed it! OK, that's a little too cynical, but they usually don't do stuff like that. If you haven't met Dr. L yet, you'll love her (you and I may have surgery with her around the same time...actually, I think you'll beat me by a bit).

    I have a question. Did you previously have the "99% no return" endo surgery with Dr. H? If so, do they have a theory on why it returned, or a different plan this time? I'm not trying to be negative, I'm just interested - 99% sounds like pie in the sky to me and your regimen sounds more realistic, so I'd like to hear what it is your doctor thought.

  11. What a great surprise at the game! I've always wondered (since I doubt we'll ever experience it) what it would be like to be in a private suite like that at a sporting event. Do you feel any less excitement at the game, being separated from the crowd like that? Or is it even more exciting (since you have a private bathroom and such a cool view? awesome perks!! )

    I don't know if I missed it when I read, but what is your August surgery for exactly? Is the doctor sure the endo is back, or is it more diagnostic, so you and the dr. can see what's going on in there now? Either way, prayers that it is successful and provides answers that have solutions!

  12. Ventilation - The surgery is mainly because I have been complaining of lower left-side abdominal pain for months now and since my u/s looked fine, adhesions are the likely culprit. There's also a chance I have endo again, but I never had this type of pain with endo so I'd be surprised if that's what's causing the pain. And yes - watching from the suite was just as exciting! And we still had fans on both sides in other boxes, so you still had that aspect as well.

    Misfit - Yes, Dr. H told me that if my endo ever came back, it wouldn't be until I was much, much older. I had assumed I'd need many surgeries throughout my childbearing years, and he corrected me that I wouldn't. But when I told Dr. B that last year, he was much more skeptical and doesn't necessarily believe you can predict that NO surgery will be needed again. I also remember talking with Dr. H about adhesions and what he used to prevent them. He seemed to think he had a pretty good method. I don't know.. maybe I am the exception. I can't wait to find out what it is!

  13. I had the clotting test done. My insurance covered. Mine came back neg. Love the baseball pics. You will be glad you took all those pics! What a memory!

  14. I'm jealous! The best seats we ever got were behind homeplate (like 6 rows back) at Fenway for a Yankees/Red Sox game during the series in 2004. But a suite? That's sweet! :)

    I think you're most likely fine with the BA and folic acid treatment, whether or not you have clotting factors. I'm thinking it's more of a "big" issue for me, needing the big gun treatment (lovenox), but as you pointed out, you have a lot of other stuff going on that still needs to be treated. Your Dr is totally on the ball, and I have the utmost faith he's fixing you up nice and good!