So, am I on the drug or not???

I have been wondering that for the past month while I have been taking this drug.  The main side-effect is canker sores.  And, I should post a pic on here right now of my face, but I will spare you the disgustingness.  My bottom lip is the HUGEST CANKER SORE I have ever seen.  It is swollen as heck!!  And I have about 10 in my mouth and in my throat.  Eating is so difficult, swallowing is so difficult, and I feel pain all throughout my body.  But, I think it is a pretty good indicator that I have the drug and not the placebo.  And, I have been feeling better lately.  I don’t desaturate as quickly, and I feel a little more energy than I usually do.  That is a good thing, trust me.  I have been really struggling lately.

So, the sores HURT LIKE HECK!!!!!!!!!!!!!!!!!!  I started 3 new prescriptions to help take care of them.  But, I feel happy and Jay and I have been high-fiving each other b/c this is a good indication that I am on the drug and not the placebo.

So, I am happy about that.  🙂  Pray for us that I am on the drug!  That would be so fantastic!

I go to Cincinnati this week, and will be there Thursday through Sunday.  I am nervous to see how things go.  I will update this after our meeting.
God Bless!  xoxoxoxxoxooxoxoxoxxoxoxoxoxo

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Published by Melanie Putnam

Hi, my name is Melanie. Thanks for checking out my blog! I have two amazing kids and the best husband anyone could be lucky enough to have. To put it simply, I have been through a lot. I was diagnosed with lymphangioleiomyomatosis (LAM) when I was pregnant with my youngest. I talk about what the disease is here: What is LAM? Essentially, it is an incurable lung disease that took away my breath literally and put me on death's doorstep by the time I was 28. I was very fortunate to receive a lung transplant and get a new shot at life. I talk about what a lung transplant involves here: What is a Lung Transplant? I have utilized this blog to share my story of a very rare lung disease and give hope to other women who struggle with it as well. I also hope to show that through all of the difficulties that life has thrown my way, it is a CHOICE to live every day as if it is my last. It very well could be, so I will never let a day go by where I do not appreciate and love all of the blessings that God has given me in this life. Starting with the extra time that this double lung transplant has given me.

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3 thoughts on “So, am I on the drug or not???”

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  1. Melanie,
    I had no idea you had a blog! I am always praying for you and your family, and I wonder how you are doing but don’t want to bug you with questions. This is cool. My sister and I blog too, I am horrible about updating though haha. I will have to add you to my pages.
    Peace,
    Becca

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  2. I thought you were not in the trial because while you qualified, you needed the lung transplant this year, which meant you could not be in the trial (July 14 entry). Whatever. It is good news and I hope the drug slows the progression of this rotten disease.

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    1. Hello, whoever you are!! My doctor said that if I decline as rapidly in the next 3 months as I have in the past 3 months that I will need to have the lung transplant this year. If I am on rapa, and it helps, I am hoping that I do not have to face transplant this year. I am terrified of a transplant.
      Personally, I think I am on the rapa and am pretty excited about it. My mouth hurts like heck with the sores, but I will take it. So, I will update at my 3 month appointment when I do all of the Pulmonary Function tests. That will be the test for sure.
      Thanks for inquiring! This is one heck of a “rotten” disease, isn’t it? May I ask who you are??

      Reply

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