Hematologist

Hi all,

We made it to the hematologist today. We both left a little shell shocked. Not because there was any bad news, but just because we were a little confused. We are dealing in an area that neither one of us really knows much about, so we are having to put a lot of trust in a doc we just met today. Taylor has very little understanding of Thalassemia, obviously; and I have never had any concerns that warranted receiving extensive treatments for it. So, it's all a little outside of our experience and understanding. Because of that I may not make tons of sense. I'll try to just bullet out what we know right now and go from there.

-First of all, Carter is unaffected by all of this right now. He is healthy and strong. He's taking all of the good stuff which is why I feel lousy. :) It's a sacrifice I'm making willingly (albeit forced into) for my son. :)

-The main thing accomplished today was more bloodwork. Dr. Trillo is running another CBC along with iron studies. He is also checking my B12, Folic Acid, and D3 levels. All of these vitamin levels are affected by Thalassemia and depending on what the levels are may require me to receive some shots of any or all of these supplements. This was not surprising to me and no big deal. We should have these results on Monday.

-My understanding at this point is that my Thalassemia numbers are very low, but that I have also developed anemia which is, of course, common in pregnancy. I cannot take iron, so we were closely watching this knowing it was a possibility. It seems Dr. Trillo's top priority is to focus on the anemia. He said that what he does for the anemia will impact the Thalassemia to some extent, but will not put me at my pre-pregnancy levels. We basically have to get my levels a little more stable before I can deliver and then after Carter is born my body will recover on its own to my own normal levels. Now, this is what I believe he was saying his priority was. We both left a little unclear on this. We are going to try to nail this down a little better in the next couple days.

-Dr. Trillo's other recommendation for me is to receive IV Iron in 4 separate infusions over the next 4 weeks. We would go to the office once a week for them to infuse 250 mg of Iron that is also laced with B12. This sent red flags up for me from the get go because I have always been told do not take iron, do not take iron. But, I also haven't ever been anemic. One of the reasons for this recommendation is that my body will use it better by IV than it would by an oral supplement. He said the dosage he is recommending is safe for my Thalassemia but needed because I'm pregnant and anemic. So, I'm having to have a lot of trust with this because he is the doctor. :) I did ask why this option instead of a blood transfusion. A blood transfusion would carry 300 mg of Iron, but his concern with that route has to do with introducing me and Carter to foreign red blood cells. He doesn't want to unnecessarily compromise Carter's blood supply or develop antibodies in me that could cause a poor reaction should I ever need an emergency transfusion. I think we are dealing with some very interesting variables when trying to get my levels up while still maintaining a safe environment for Carter. He was taking all of that into consideration with his recommendations.

-Dr. Trillo also mentioned that this plan will not have an immediate effect...that's the reason for 4 weeks of infusions, and I will need blood work to monitor progress as we go. He agreed with my OB that we need my levels up before I deliver. There will still be a possibility of needing another round of treatment of some sort when I deliver, but we will figure that out later.

So, that's the info we got. Taylor and I left with some questions. We talked to my dad some who also has Thalassemia and has spent more time talking to hematologists than we have. I also am really feeling the need to visit with my OB before the first infusion. I have a call in to them, and hope to get their opinion tomorrow. We are both a little nervous since this is completely new territory. I'm nervous about a reaction to the infusion, but also aware that this may be our best option for helping me feel better. We are so thankful that this is not a serious issue. It will in many ways fix itself once Carter is here and my body recovers from delivery. It's just something that needs to be addressed at this time to help me get through the next 11 weeks. We are very thankful that Carter is healthy and continues to grow as he should. All in all, it was an informative afternoon even if a little confusing. We hope to have a little more clarity after talking to my OB and getting the blood work results from today. My first infusion is for now scheduled for Monday morning.

That's a long update, but I knew some of you would want to know the details so you could be praying specifically. We appreciate your prayers. For now, please know that I am fine besides extreme fatigue. Taylor is doing a wonderful job of filling in around here when I just can't stand up anymore. He's an incredible support to me, and I'm so thankful he's the one on this journey of life with me! Thank you for your prayers!!!