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I’m immensely grateful for the opportunity to receive medication for my rare disease, spinal muscular atrophy (SMA). It’s offered me so much hope for my future, and most importantly, put the progression of my disease to a halt. The one thing, however, I dislike about taking my medication, is the routine of bloodwork. 

Depending on your physician, the number and frequency of blood tests can vary, but are nonetheless a staple of a life with SMA.  It’s a preventative strategy to ensure the patient receiving the treatment maintains the best quality of health possible. 

Meanwhile, my physician is very thorough, and I appreciate his concern for my overall health. He requires I draw blood every 3 months. Mainly, this is to keep an eye on my liver and kidney functions, along with some other markers that could potentially become elevated. While I don’t disagree with the importance of the required, frequent labs, I despise getting my blood drawn.

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There’s never been a pleasant time getting my blood drawn. I understand many people have this similar phobia, but mine is caused by trauma. I’ve never gone to get bloodwork and have the experience be bliss. It’s never one stick,  and you’re good to go. It’s multiple sticks in the arm if that even ends up working. The whole situation is gut-wrenching for me and the phlebotomist. No matter how skilled and professional the phlebotomist is, it’s inevitable that it is not going to go well. 

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Meanwhile, what makes drawing my blood so challenging, is the size of my arms and their contractures.  My arms are so tiny that the butterfly needle is the only option to get the job done. Typically, those needles are used for infants and toddlers. The needles take a long time for the blood to fill the tubes, and that can become frustrating. And, because my contractures are more on the severe side, a good blood flow is difficult for the phlebotomist to find.

Nevertheless, it gives the phlebotomist no other choice than to keep looking for a vein that will take. After a few pokes, we usually get just enough blood samples for the labs, however, that’s not without getting air bubbles trapped in my veins and a very sore and bruised arm afterward. 

I’m not a fan of needles regardless of how difficult the process of retrieving my blood is anyway. The anxiety and fear leading up to the experience are difficult to suppress. I try to remain as calm as possible,  but my health care team always seems a little apprehensive because they don’t want to hurt me or be liable for any injury that could occur. I empathize with them. I’m sure these rare cases cause them just as much anxiety and stress as they do for me. 

In all that said, I’ve recently voiced my concern to my physician about drawing blood so frequently. We agreed that extending the time to every 6 months shouldn’t be an issue. I’ve been on the medication for over a year, and no critical or serious side effects have occurred. Until something is invented that doesn’t require a needle and blood to examine my insides, braving the needle is a must.