I can't believe how fast time marches on. As of, Sept 13th I've been on Orkambi for 1-year. I remember thinking I'd never live to see the day that a drug that treated the underlying cause of Cystic Fibrosis would hit the market. However, on Sept 13th, 2015, that much anticipated pink pill hit my hot little hands and I joyfully placed it on my tongue with a big gulp of water - down the hatch it went!
Little did I know just how rough adjusting to this new treatment would be on my body. It was horrific for nearly 3-months. I wanted to throw in the towel a minimum of 5x, thinking this drug just isn't going to work for me; maybe they'll come up with another formulation that my body can tolerate. I was nauseous, had body aches & cramps, and overall felt like I had the flu for three very long grueling months. However, over time it all started to subside. I figured out things that my body needed to accompany this new treatment. For one thing, it's recommended to eat a high fat meal with each dose, this is especially true for me. I actually increased the fat intake to 20-30mg each dose. I also need a full 16oz of water with each dose. That helped with the upset stomach issues. These are still present today. If I don't have either high fat or lots of water I feel off and weird all day long.
So, fast forward to today. I'm feeling really good. I've had a few colds and other CF related issues throughout the year but I've been able to bounce back without the need for IV medications or hospitalization. Bryan and I became foster parents, which brought a different kind of stress to my life, that I am convinced without the aid of Orkambi would have driven me to the hospital.
While I think it has been a wonderful addition to my treatment regime, I don't think it's a miracle drug. Orkambi in combination to all my other therapies continue to allow me to live a fairly good quality of life. I will remain on Orkambi until further notice or something is released that will take its place.
I do think about how it will affect the younger generations. I'm hopeful that when they reach my age they won't be dealing with significant decreases in lung function, pancreatic disease, CF-relataed diabetes, arthritis and all the other things CF affects/does. That taking Orkambi early on in life will assist in dramatically slowing the progressiveness of CF.
We ARE making great strides and there IS so much hope.
~Doodlin'
Little did I know just how rough adjusting to this new treatment would be on my body. It was horrific for nearly 3-months. I wanted to throw in the towel a minimum of 5x, thinking this drug just isn't going to work for me; maybe they'll come up with another formulation that my body can tolerate. I was nauseous, had body aches & cramps, and overall felt like I had the flu for three very long grueling months. However, over time it all started to subside. I figured out things that my body needed to accompany this new treatment. For one thing, it's recommended to eat a high fat meal with each dose, this is especially true for me. I actually increased the fat intake to 20-30mg each dose. I also need a full 16oz of water with each dose. That helped with the upset stomach issues. These are still present today. If I don't have either high fat or lots of water I feel off and weird all day long.
So, fast forward to today. I'm feeling really good. I've had a few colds and other CF related issues throughout the year but I've been able to bounce back without the need for IV medications or hospitalization. Bryan and I became foster parents, which brought a different kind of stress to my life, that I am convinced without the aid of Orkambi would have driven me to the hospital.
While I think it has been a wonderful addition to my treatment regime, I don't think it's a miracle drug. Orkambi in combination to all my other therapies continue to allow me to live a fairly good quality of life. I will remain on Orkambi until further notice or something is released that will take its place.
I do think about how it will affect the younger generations. I'm hopeful that when they reach my age they won't be dealing with significant decreases in lung function, pancreatic disease, CF-relataed diabetes, arthritis and all the other things CF affects/does. That taking Orkambi early on in life will assist in dramatically slowing the progressiveness of CF.
We ARE making great strides and there IS so much hope.
~Doodlin'
My life is beautiful thanks to you, Mein Helfer. Lord Jesus in my life as a candle light in the darkness. You showed me the meaning of faith with your words. I know that even when I cried all day thinking about how to recover, you were not sleeping, you were dear to me. I contacted the herbal center Dr Itua, who lived in West Africa. A friend of mine here in Hamburg is also from Africa. She told me about African herbs but I was nervous. I am very afraid when it comes to Africa because I heard many terrible things about them because of my Christianity. god for direction, take a bold step and get in touch with him in the email and then move to WhatsApp, he asked me if I can come for treatment or I want a delivery, I told him I wanted to know him I buy ticket in 2 ways to Africa To meet Dr. Itua, I went there and I was speechless from the people I saw there. Patent, sick people. Itua is a god sent to the world, I told my pastor about what I am doing, Pastor Bill Scheer. We have a real battle beautifully with Spirit and Flesh. Adoration that same night. He prayed for me and asked me to lead. I spent 2 weeks and 2 days in Africa at Dr Itua Herbal Home. After the treatment, he asked me to meet his nurse for the HIV test when I did it. It was negative, I asked my friend to take me to another nearby hospital when I arrived, it was negative. I was overwhite with the result, but happy inside of me. We went with Dr. Itua, I thank him but I explain that I do not have enough to show him my appreciation, that he understands my situation, but I promise that he will testify about his good work. Thank God for my dear friend, Emma, I know I could be reading this now, I want to thank you. And many thanks to Dr. Itua Herbal Center. He gave me his calendar that I put on my wall in my house. Dr. Itua can also cure the following diseases ... Cancer, HIV, Herpes, Hepatitis B, Inflammatory Liver, Diabetis, Bladder Cancer,Colorectal Cancer,Breast Cancer,Kidney Cancer,Leukemia,Lun,Fribroid,Parkinson's disease,Inflammatory bowel disease ,Fibromyalgia, recover your ex. You can contact him by email or whatsapp, @ .. drituaherbalcenter@gmail.com, phone number .. + 2348149277967 .. He is a good doctor, talk to him kindly. I'm sure he will also listen to you.
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