The past few weeks have been a bit crazy for me as I continue to adjust to the trial requirements and the effects of the drug treatment. As I shared in my last post, I have been experiencing side effects that have been at best uncomfortable and at worst painful. However, I am fortunate that I have not had severe side effects. The side effects I have had have been mostly classified as “moderate.” I have also been surprised to see how my body has reacted to my “new” diet. As I have shared before, the trial requires me to maintain a stable level of protein intake per day so that they can use that as a starting point to see if the drug is working to bring down my protein levels. The amount of protein per day is not the same as what my normal PKU dietitian requires. The dietitian and doctors of the trial want me to follow an amount that is realistic for me for me to keep for the duration of the trial. What we came to as a realistic amount, is about double what my ideal diet is from my normal dietitian. That being said, while this is much more obtainable, I have never been consistently on this amount of protein per day. I have begun to feel the effects of it in my mood, my memory, my ability to pay attention in class and to retain information. While I believe it is manageable (and hopefully short term if the drug works) this is a side effect that I was not expecting. So these past few weeks have been a time of adjustment towards my new diet and the continued increase of the drug.
Today was my last day of a “trial week.” In this trial week I have a total of 40 mg which involved dosing 10 mg every other day. Starting tomorrow I will begin a 70 mg week where I dose 10 mg every day until next Tuesday. That Wednesday I will begin my first week at my full dose of 20 mg every day. I am hoping to see the drug begin to take effect two weeks into my full dosing.
Prayers would really be appreciated in this time! I have several things that I would really appreciate some prayer on:
- The higher amounts of the drug have caused severe fatigue on the days of injection. I am worried about being able to handle my normal day-to-day life with having daily injections. Please pray that my body becomes accustomed to the drug and that the fatigue begins to wear off.
- Please pray for the reactions to go down (the clinic is predicting them to go down once I am on my full dose for a couple weeks). And please pray for me as I continue to deal with the reactions.
- There has been some issues with when the cut off date will be for this trial. Meaning, there was been some back and forth about when the end date should be for when I am required to have responded to the drug. If i respond, I get moved to the next trial. If I don’t then I do not get to move on. Please pray for this process and that I will be given enough time to respond.
- Please pray for the drug to work.
- Ultimately, please pray that the Lord use this time in my life to glorify Him no matter what the results are. Please pray for me as I try to deal with whatever the results are and to be content in what the Lord provides.
Thank you friends and family for your prayers and your kind words as I have gone through this trial. I am constantly surprised and blessed by everyone’s thoughtfulness and concern. It means so much to me and this would be very difficult to do without your support. With everything that is going on with this trial it has been more difficult to focus on the other things in my life. Most the time school gets my attention second to the trial. However, I don’t want to forget to love and pursue the people in my life. With this trial it is easy for me to focus on myself and what I am going through. It is a sin I am confessing often to the Lord and asking forgiveness on. I would love to be praying for you all too. If you need prayer please message me with your requests, I would love to return the favor.
I also ask for your patience. With my protein levels where they are at, my mood is affected. I have been more moody than normal and even more introverted. While it is not an excuse, it has made reaching out to others more difficult and less natural. I have struggled with this side effect a lot because this is not how I want to be around others. So please be patient with me and know that I am trying to love you all the way that you have loved me and blessed me these past few months.
Lastly, I would like to end with these verses. The Lord has shown me throughout my life that I am not a mistake. The fact that I have PKU is not because God’s hand slipped when He made me. While I may not know all the reasons why God has allowed me to be born with PKU, I do know without a doubt that Psalms 139:13-16 applies to me just as it does to everyone else. I was delicately and intentionally created. I was made with a purpose and blessed with the chance to use PKU to glorify my Creator. It is my hope that this trial is even more of a chance to glorify Him and to allow myself to be used for His glory. While I really, really hope this new drug treatment works, my prayer is that the Lord will be glorified through me no matter what the results are. It is my hope that anyone with PKU or a child with PKU who reads this can leave knowing that they (or their child) are not a mistake. They are not incomplete. They were made by a loving creator who creates with love, care and purpose, even if we don’t always understand what that purpose is.
atrialofgrace 