I have had many ask me how I am feeling this week. The answer is not any better and not any worse-which is what I was supposed to feel like this week. It will take 2 to 3 infusions for me to begin to feel any positive results. And, of course, we didn't want any adverse reactions which I have had none. So, although I still feel exhausted and beyond fatigued this week it's kind of like saying, "No news is good news." I'm getting yet another lesson in patience and taking it one day at a time. My husband is an awesome support and so good at protecting me and making sure I am not overdoing it right now! I am able to get out and do things or be up and around to do things, but my stamina does not last very long at all. That's okay though. I am being taken care of, and I do not want for anything. Thank you so much for everyone's concern and prayers!!! We appreciate it!
Thursday, March 24, 2011
Monday, March 21, 2011
My first IV Iron Infusion was this morning. All went well! We met with Dr. T. first. He had done another set of blood work last Wednesday and wanted to go over the results with us. My iron was still very low. My hemoglobin is low but had gone up a little bit. My folic acid, B12, and D3 levels were all normal, so no shots! The infusion process took longer than we expected. Dr. T. had told us it would take about 30 minutes. Once in the infusion room the nurse told us she doesn't like to do that amount of iron in less than an hour and a half. So, we settled in for a little longer morning than planned. They hooked me all up to the IV, and then brought it the good stuff - it looks like Coke. It's dark brown. It was gross. I kept thinking that it is really weird to watch all of this dark brown stuff pumping into my veins. But, oh well. It didn't hurt. :)
I had no allergic reactions which is apparently the most common reaction; though most people don't have any reactions at all. The biggest "issue" we had was that my IV site keep aching. It turned out it was because my arm was really, really cold. They ended up wrapping my arm in a heating pad and that helped some, so we know how to fix that now if we need to. They give me Tylenol and Benadryl at the start to help with any reactions, etc. I think they do this each time. By the time the infusion was finished the Benadryl was well in my system, and I was S-L-E-E-P-Y! :) We grabbed lunch and came home, and I crashed!
So, it was a very successful morning despite being longer than we anticipated. One of the strangest things about the whole experience was sitting in a room full of people receiving chemo. It was weird to be sitting there hooked up to the same machine as them, and it was hard to think about those sweet individuals sitting there with poison pumping into their veins. I pray that all of them experience success from their treatments!
The plan is to continue this same dosage (300 mg of iron) once a week for 4 weeks - today was week 1. So, 3 more infusions, and then on week 5 I will go back in to have more blood work done to see if it brought my numbers up to where they want them to be before I deliver. That's as far as we know right now!
I appreciate all of the prayers so much. Taylor and I had been a little nervous about this since it was unknown territory. After today we are feeling much better about the actual infusions. We are still praying and need prayers that this will do what it is supposed to do so that I can have a healthy delivery! We love each of you! Thank you again for lifting us and our sweet son up to the Father!
Thursday, March 17, 2011
Well, we have had some time to absorb the doc's info yesterday; and we are feeling a little better about the plan. My dad sat down last night and did a lot of research regarding my situation. It turns out that gestational anemia in patients with Thalassemia is very common. While Thalassemia patients do not need iron normally (in fact it's toxic), many pregnant Thalassemia patients do. The best method for this treatment is intravenously-which is what Dr. T recommended yesterday. My grandmother is having some complications with her Thalassemia, and Dad is taking her to see a hematologist tomorrow. He's gonna try to throw in a pregnancy question and get a "back door second opinion" while he's there. :)
I also talked to the nurse at my OB's office. They like Dr. T's recommendation and assured me it is perfectly safe for me. Her main point to me was that with my iron as low as it is delivery will be very dangerous for me if we do not get my iron levels back up.
So-my iron infusions will begin on Monday morning. I'm still slightly nervous about a negative reaction, but will be praying through that between now and then. I have a little more clarity for a couple questions I want to ask Dr. T that I didn't think about yesterday, but it won't change the plan.
Thanks so much for the prayers! We really appreciate them!
Wednesday, March 16, 2011
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!!!
Tuesday, March 15, 2011
For this memory verse I decided to go with something that I sort of already have memorized. I chose a different version so that a slight change in wording would force me to concentrate even more on the message of the verse. Here's the verse from the Holman Christian Standard Bible:
"I am able to do all things through Him who strengthens me."
My reasonings for going with a more simple verse this time are two-fold:
1) I did not do a very good job of working on my memory work for verse #5. I am no where near close to having my Psalm 119 passage committed to memory, and I need to a little more time with it. By doing a simpler verse this time I can still dedicate good time to my last passage.
2) I got a call from my OB yesterday that I need to see a hematologist regarding some blood work. I have a blood disorder (I think I've mentioned that before.) It's called Thalassemia. At its basic level it affects the amount of oxygen that my red blood cells carry. I'm sure there are more intense medical explanations to it, but that's the basics. Throughout my life all I have needed to do to address my disorder is to take extra Folic Acid and B12. These two vitamins help increase the amount of red blood cells I produce therefore allowing my blood to have more oxygen. Without these vitamins I end up feeling very tired and a little flu-like. So, it's a simple fix that as long as I keep taking my vitamins I barely realize I have a blood disorder. Being pregnant makes this very different though. As part of Thalassemia, I am not allowed to take Iron. I'm not totally sure of the reasons why other than that my body can't process synthetic iron very well and I end up with a toxicity of iron if I do. So, my prenatal vitamin is without iron. We have closely been monitoring my hemoglobin and iron levels throughout the pregnancy. My hemoglobin level has gradually lowered throughout the pregnancy, but not to a point we were concerned about. Yes, it made me more tired, but it wasn't a concern. My iron levels had been fairly normal the entire time.
Having said that, I had blood work done last week and everything changed. My iron levels are low and my hemoglobin levels are lower than they have ever been in my life. Not at a dangerous level that would affect Carter, but at a level that would not be healthy for me at delivery. These levels explain why I my fatigue keeps getting more pervasive and why I am starting to sleep longer and longer hours without feeling rested. Anyway, we are going to see a hematologist tomorrow for him to help us decide how to fix this. I can't take iron, so that is not an option. This dr may have several options for us, I"m not sure. I know that one (maybe the only ? ) option will be a blood transfusion to try to get some healthy red blood cells in my body. We shall see what he says tomorrow.
So, what does this verse have anything to do with my blood? Well, I'm fighting a little worry in this situation. I know Carter is fine, so that's not my concern. I'm worried about having energy to finish preparing for him and to care for him when he first gets here. If my levels are this low already, what will it be like when I deliver? Obviously, that's why we are seeing a specialist-cause he will be able to walk us through this and monitor me through these final 11 1/2 weeks. But, it still makes me nervous a little. I also find myself worrying about what if the drs decide I need to cut even more out of my schedule and just rest. Mentally that's a little overwhelming to me right now. I am redirecting my thoughts right now to not think about this until we get more info tomorrow. Obviously my top priority will be to take care of me and Carter above all else. Laying in bed last night this verse came to mind, and I thought that making it my verse for the next two weeks might be extremely important for me mentally and emotionally as we figure out what to do about my blood levels and consequently my energy levels. So, Philippians 4:13 it is! God created me to have babies. I truly believe that. He also knew I would have Thalassemia. So, bad blood levels or not, He will equip me with what I need to end this pregnancy strong and start life as a mommy in a healthy way.
So, what verse is important to you right now?
Labels: 2011 Memory Verses
Tuesday, March 1, 2011
Short and sweet this time cause I"m too tired to tell you right now why I've picked this Scripture. I'll blog about that later.
Psalm 119: 10-11
"I seek you with all my heart;
do not let me stray from your commands.
I have hidden your word in my heart
that I might not sin against you."
Labels: 2011 Memory Verses