1st Anniversary: Getting Off Veletri

It has been exactly 1 year since I came off Veletri. I am grateful for that drug. It allowed me to eventually breathe on my own with no pain. It helped me to begin exercising again. It bought me some time so I could figure out how to begin healing instead of covering up symptoms.  For those who don’t know what Veletri is, let me share some knowledge. Veletri is a drug administered intravenously. You carry it in a fanny pack and never take it off. You sleep, shower, eat, play, work, etc, with it on. The medication is given through a catheter inserted into your chest. You change the medication every 24 hours and it must be kept relatively cool. It helps patients with severe Pulmonary Hypertension who meet the criteria, breathe and move without getting exhausted.



Celebrating my freedom with my friends and family

Being on it was hard at first but it got so much easier when I began doing all the things I loved to do. I had some limitations. But whoever knows me, knows that I’m truly limitless when I want something. When I came off I celebrated for a month. It was the most freeing month of my life. I didn’t know what to do with all the joy I felt. Nothing could make me sad. My 1st foster son, whom I raised for 2 years, went home around the same time and even that was an easy transition because of all the happiness being free brought.


How has it been being off Veletri? In one word: Amazing! I was switched from an iv drug to a pill form. It didn’t take me any time to adjust. The jaw pain I felt from Veletri almost immediately went away. The main thing I had to get used to was eating every 8 hours in order to take my new pills correctly. I was not used to eating so much and at random times so that caused me to gain a little weight. But I didn’t care. I was free. It was about 4 months before I stopped looking back to grab my bag when I got up from a chair or out of the shower. In this year, I’ve had no concerns. I have gotten better. I am exercising consistently. And I feel like a normal human being. I didn’t renew my handicap placard this year because I no longer feel disabled. I can finally breathe with no pain in my chest. My doctors made the right call when they put me on Veletri and because I pushed and pushed I was able to get off it much faster than we all thought. The prayers of my church family have been heard and are being answered. From where I was in 2011 to where I am now is nothing short of a miracle. I should not be here. BUT GOD…!

He gave me the strength I needed to find purpose in my life and go for it. Now I can hold my babies instead of my medication.


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  1. Astrid says:

    You are an Inspiration to me, always!!!


  2. Antoinette Lewis says:

    Thank you for sharing your fabulous story. I hope to do the same thing. What oral pill did you transition to? I have been on Veletri for 2 years and am begging to get off of it for some freedom.


    • I went to Orenitram. So far so good. My heart & pressure is normal. I was told I may even be able to get off those. I am so grateful for veletri. It was a love hate relationship. If your heart is ready, your doc will know. Keep asking but if he doesnt take you off, just be grateful to be breathing. With that being said, i hope you get off it too


  3. TonyB says:

    Thank you so much for sharing your story. My wife of 44 years has just been put on Veletri and this is due to PAH caused from Liver Decease. My wife has a Liver doctor who is setting up everything for her to get a Liver Transplant but with having this PAH, she has to get those pressures down before a transplant can be done. I know your story will give her hope as her doctor has told us a new liver should make the PAH go away. God bless and wishing and Praying for your continued Freedom! Tony

    Liked by 1 person

  4. Christine says:

    Thank you for writing this. I appreciate being able to read others experiences with ph. It really helps.
    Can I ask you… I have heard that coming off Velitri and going on to another medication can be risky in that if you ever need Velitri again it may not be effective. Have you heard this or did your doctor’s say anything about this?


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