First, let me start by saying that my heart has been overwhelmingly warmed and touched by ALL of your support! Issues dealing with my health have, for the most part, been kept to myself until recently. I wanted to open up and be honest with everyone about what’s going on. You all have shown such an interest, and have wanted to know the details. In honor of your questioning, it’s probably easiest to send this message with the details for you all to read =)
I need you to know that above all else, I am God’s, and He is mine. I serve One awesome God, who knows what He has in store for me, despite my willingness to sometimes disagree with His plan, I will always go along with it HAPPILY. From an early point in my life, I have been willing to accept His plan for me above what doctors and others try to tell me. I have recently been so convicted to serve this great God of ours, that I left my job to do full time missions in Chillicothe, Ohio. My goal, as always, is to make known the Love of Jesus Christ to those who need His message of Hope, and the victory of His Salvation. As you read this note, please keep in the foreground of your mind, that I am overall OK. Emotionally, I am at peace. All of the awww’s are appreciated, but I tell you that my faith is bigger than an awww..moment. I don’t desire sympathy (though I know it’s there), but rather, I would wish for you to take that energy you’d waste on an “awww” and turn it into prayer, which we know changes outcomes! =)
We came to NYC to visit the worlds leading specialists on Diamond Blackfan Anemia (the blood disorder I have). If you would like to know more about (DBA) please visit www.dbar.org. This Anemia is different than what any of you think anemia is….lol. I always get the questions: So you have low iron? Do you take Folic Acid? Ohh, B12 helps with that right? With DBA, the problem is not with the ability to send out signals to the body to make more Red Blood Cells, the problem rather is with the Bone Marrow’s ability to MAKE blood. My bone marrow receives the messages from the body (Actually tons of elevated messages), but the bone marrow gets that message and chooses to NOT RESPOND. Kind of like, if you really wanted to get in touch with me, so you called, and called, left messages, texted…etc. Then, I listened and heard all the messages, however, refused to call you back (usually an ex-girl/boyfriend response when you’re mad)…lol.
I’m not suggesting that my bone marrow and I are in an excommunicated dating relationship…But, shoot, who am I kidding… my bone marrow hates me. haha. But I’m trying to love it back into a loving relationship by kindling with experimental medications and the power of Jesus… In the end…. WE WILL WIN BACK IT’S LOVE! =) When I was born, up until the age 18, I responded to a medication called Prednisone. YES, PREDNISONE! The same medication you get for your crazy inflammation things and other sicknesses. Prednisone, is a steroid, which has many harmful effects on the inside of the body. It also causes you to gain weight and look pretty heavy in the face (like the cool Aid man). lol. This is why, when in high school and growing up, I didn’t grow very tall, and I looked pudgy. It wasn’t that I ate too many Little Debbie’s, it was a result of medication. So I took people’s comments and criticisms, let it roll of my back and truly adopted Christ’s stance of “Forgive them father, for the know not what they speak of or do.”
Growing up, we did growth hormone therapy in an effort to help me grow, because all of my endocrine responses were being subdued by the high dose Prednisone. Another explanation for why I am how I am. My voice, it didn’t ever really get “deep” and so thank you Prednisone for all your hard work, it’s humbling to call places and be called Ma’am all the time… lol. When I was a freshman in high school, I was in the marching band. It was a “safe” thing I could do without worrying about medical complications if I got hit hard at other sports. I actually picked up on most percussive instruments quickly!! And found I was good at it, and loved it. Praise God! Because of the marching band when I was young, I have moved on to since record a CD with my band, and sit in on many neat opportunities to play with other groups. Truly not being able to play sports as I got older was Jesus’ way of molding me into the musical side of my service to Him for the future to come.
One football Friday night, I was marching around the track at PVHS, and actually passed out. I was taken to Columbus Children’s Hospital (where we had been going for treatment), for evaluation. After I was seen there, mom was suggesting that there were different issues that must be arising. The doctors refused to believe that, saying, “We have already seen everything else, he’s just getting worse.” So, we left there and drove with smiles down to Cincinnati Children’s Hospital. When we met them, we felt a great connection, and we felt very loved! We developed a real heart for each other. In fact, my heart liked it so much, it decided it wanted to go through surgery there with Cardiothoracic Surgeon Dr. Peter Manning. Thus, it happened; January 24th, 2001, open heart surgery. We learned that the problem at age 14, wasn’t worsening of anemia, rather, it was a CONGENITAL HEART DEFECT (that we weren’t going to check because “we’ve already looked at everything”). It was confirmed at that point, Cincinnati is where we needed to stay.
My blood disorder affects approximately 600 or so people that we know of, therefore, when you find a doctor that sees more than 1 of you, it’s a good idea to stick with them! So, we had no hesitation going to Cinci because they saw around 8 or so. Now, back to high school. After surgery, I grew what seemed to be at least 1-2 feet taller…lol. THANK GOD! I get the most changed award in the year book…lol. The lack of oxygen that I was having, because of the heart defect, was limiting my ability to grow fully. So after surgery, I SHOT UP! Jack N’ the Beanstalk style. I graduated High School (YAY), and made my way onto college at Ohio University in Athens. This was bitter sweet for me. I stayed approximately 1 quarter. Yep, 1. haha. I began feeling fatigued and worn out as I climbed the mountains to class everyday. Again, NOT BECAUSE OF THE LITTLE DEBBIES! I knew that something was wrong.
We went for evaluation in Cincinnati, and they took out a piece of bone marrow from my hip, to discover, my production of Red Blood Cells was very low. (We Knew THAT, but needed answers). What we found was that it seemed I was no longer responding to Prednisone… This begins the next chapter of my life: Blood Transfusion Dependency. We prayed to find more answers, but with (3) possible treatment options for me…no cigar. Treatment option 1: Steroid (Prednisone) therapy. Treatment option 2: Blood Transfusions. Treatment option 3: Bone Marrow Transplant. I wasn’t about to go with 3, so we just skipped to 2 =) So over time, I was receiving blood transfusions regularly. Eventually we reached a point where the frequency of blood transfusions weren’t holding, so we kept moving the interval closer, closer, closer, closer…until we are now (and have been for 4 years) getting 3 units of O positive blood every 3 weeks. WOW, that’s a lot of blood. It’s approx. 52 units a year…. SO, THANK YOU FOR DONATING =) ….wait what? you don’t donate blood…?? WELL WHY THE #$%^# NOT! GET ON IT!……sorry…..anyways….
Here we are, years later…..but this begins chapter 3. This is the chapter that nobody likes to talk about….it involves scary words. Words like, Iron Overload, Liver Failure, Kidney Failure, Heart Failure, Death…. What do you do when you are somewhere and God is telling you it’s time to ask more questions, get more answers? You go to where the world’s leading research team is located. New York City. You see, your body can only tolerate the amount of iron you take in through your diet, so when I dump 1000ml of blood into my body every 3 weeks….I also dump 1000mg of Iron into it at the same time. There is approximately 1mg of Fe, for every 1ml of blood. So, now imagine over 52 units of blood X 1000mg of iron per transfusion X5 years = IRON MAN. That’s right folks…super human abilities to stick to magnetic ceilings, pick up most Volkswagen Vehicles, and even steal the heart of a lady or two in my free time…. =) Okay, so maybe only 1 of those is true. Unfortunate for the ladies and magnetic ceilings… but at least the Volkswagen’s can be moved safely without turning the key…
So here we sit….talking to top professionals in their field…telling me what’s wrong, and how we fix it. It’s difficult when you live to 25 without worrying about much of anything, and then suddenly your life comes into view. As I posted, the world’s leading Iron research doctor says to me: “Derek, death is standing on your shoulder….I think it’s about time we glance over at him and pay him some attention before it’s too late.” We are in fact at that crucial point. Given 6 months to live if the iron doesn’t come out… All of my scans, tests, labs…ALL reflect the huge amount of iron that’s settling in my organs, slowing their production…slowing their functions. I do wear a pump on my hip (don’t act like you haven’t noticed…) lol. It’s in a black sunglasses bag, and hold the key to my survival. SO WE THOUGHT. Apparently, at the rate I receive transfusions, the medication only has time to remove the iron I get from each transfusion from here on out…. BUT WHAT ABOUT WHAT’S ALREADY THERE DOING DAMAGE!? Good question. WE MUST GET IT OUT!
There is a plan for success. I have high amounts of iron in my heart…. liver…..pancreas…..and others. But, again, we are not hopeless. Our faith will not be shaken. We feel God put us in NYC for these doctors, because if we would have stayed where we were without coming…..they gave me the 6 month timeline for life. Since this visit we have a game-plan! I don’t like the plan, but I and others like the idea of me living…so we’re going to do it. When I get home, we’re going to have a PICC line placed. This is a large IV catheter that goes in your vein in the arm, and feeds all the way up to your right atrium of the heart. This will allow us to receive high doses of Desferal (Iron Chelation Drug), into my system, to pillage the iron, lock onto it, and carry it’s sorry @$$ out of the body. Pardon the language…lol. In conjunction with this 24 hour continuous IV Desferal, we will be taking a delicious medication that mixes into food and drinks called Exjade. MMMMM… have you ever been tempted to each chalk when you were a kid….well, DON’T. I feel like I’m sure I know what it tastes like now…lol
So, both of these medications are going to aggressively get the “stored iron” out of the body for us….then we can maintain the iron I get from blood in the future with the same therapy that I use now! They told us: “if you would have waited longer, there would not be a later.” You came at precisely the right time to allow reversal of all of this bad…and turn it into a LONG LASTING LIFE… =) NOW THE GOOD NEWS!!!!!
I began a NEW MEDICATION! This medication was JUST APPROVED by the FDA, so very little is known about how it works….BUT, I can tell you this! This medication was previously trialed on patients who had multiple forms of Cancer. They were getting Chemotherapy, and progressing in their treatment. The study had to be stopped because at least 2 of the participants were showing a side effect of ELEVATED HEMOGLOBIN! I mean like REALLY HIGH! Nobody was sure why it was causing that, but they had to discontinue this medication in all of the cancer patients because the med was being given to help STOP OSTEOPOROSIS and REBUILD BONE! So……………., what a convenient side effect for people like DEREK, who need that specific issue corrected. SO, yesterday, I started a new medication that is a once per month injection (like a women’s once a month Boniva)….again….sounding like a lady…taking lady meds….YIKES…lol.
Anyways, if this medication raises my hemoglobin, it could STOP the need for BLOOD TRANSFUSIONS, and allow me to focus on getting the iron out. Then, once the iron is out….I will just get the injection once per month! IT’S AMAZING!!! So our prayer, is that the injection works…and then we can live a life full of HIGH HEMOGLOBIN, SPORTS, RUNNING….ALL OF IT I COULD NEVER DO (in high amounts), WILL BE POSSIBLE! =) This is huge guys…so your prayers for this are appreciated. I will have to come back to NYC every month for an injection and follow up…. DARN, NO PLEASE DON’T MAKE ME GO TO NYC EVERY MONTH… as you can see I’m hurt by it…lol. =)
Again, everyone….thank you so much for everything. I now feel like I’ve written an outline for a book I should write in full length =) The ending chapter is titled: Our God Heals. We are dependent on your support and prayers, and love! Thanks guys for being with us through this! WE WILL OVERCOME! All the way my savior leads me…through each winding path I take. How could I doubt His endless Mercies? We walk in confidence that no matter what happens….GOD IS LOVE. =)
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