A new PH medicine to be added..

Living Oxygen for Life

Well, I’m pretty nervous because I’m going to subject myself to trying another Pulmonary Hypertension medication that’s fairly new. It’s called Adempas. It will be added to the PH medicine that I’m already taking, Tracleer.

It’s so complicated, with all of my health problems, to treat Pulmonary Hypertension. With each PH medicine I try (with the exception to Tracleer at half dose), my body isn’t able to tolerate them because of my scoliosis that created my Restrictive Lung Disease problem.

What’s suppose to help one of my problems creates terrible results for my other problems. I can’t tell you how frustrating it is for K to watch me go through this and not be able to do anything to help make trying new medicines any easier. Spouses go through so much along with the patients. It’s just as heart wrenching and maddening as being the one trying a new medicine, unsure if this is the one to either make me feel me feel better or make me feel so much worse. There is no cure. We can only hope to slow its progression until a cure is found.

So, here I am after my Pulmonary Hypertension doctor appointment today, waiting to hear if the specialty medication application was approved which will probably be some time next week. Then, I’ll find out how much more this will cost me or if I will qualify for Co-Pay assistance. PH medicine does not come cheaply and can only be dispensed from a “Specialty” Pharmcy. Thankfully, my PH doctor has agreed for me to be titrated up on this medicine slower than normal. We’re hoping by going a little slower, I may be able to tolerate this medicine a little more smoothly.

Meanwhile, it’s raining like crazy here. The air is holding on to all that moisture as long as it can to make me suffer, I’m sure! haha! Not to worry! I have ice cream in the freezer. It helps me to survive anything. Probably even a Zombie Apocalypse too! You never know! Don’t doubt the power of ice cream!!! Mwahahaha!

Be well everyone! Have fun with the Trick-or-Treaters. May you actually have “little” kids show up at your door this year. Be safe.

Remember that November is Pulmonary Hypertension Awareness month.


12 thoughts on “A new PH medicine to be added..

  1. I have often thought our spouses need a class or group to go to for support also. It’s about the worst thing to happen to them, when we get sick. Chronic is pretty much forever. A hard thing for them to deal with daily, too. I hope your new med works well and gives you no problems. Take care.

  2. Keeping you in my prayers. Your attitude is so wonderful. Bless your K. I have a B and he is my rock. I was incorrectly diagnosed in 2012 with PAH and put on Adcirca then in 2015 Opsumit was added. I got sicker and sicker and finally in June of this year I was accepted at the Pulmonary Hypertension Center at the University of Arizona Medical Hospital and School. I was never given a right heart cath until June. I was diagnosed at that time with Pulmonary Venous Hypertension. I was taken off all medication and am now in the process of starting from square 1. I have had to go thru all the testing again and I also have a heart problem that hasn’t been totally diagnosed yet. The Dr’s I am working with are wonderful and I hope soon to be able to know what all is wrong and how I will be treated. Then we will move forward with our lives. Wishing you the best and thanks for writing your blog.

    • Marilyn, I’m so happy that you have someone supportive to your needs. I got really sick when I was placed on Opsumit. For some reason when I was on Opsumit for 3 months, it affected my thyroid causing Hyperthyroidism about 14 months ago. It’s taken until now to get my thyroid labs back to normal range. That was no fun.

      Power to you and I hope the doctors continue to help you and to discover the correct diagnosis of your heart problem. *hug*

    • Thank you Carol. I don’t see how people can go through chronic conditions alone. K has been my stabilizer in my life. For someone who get terrible motion sickness, he does great on the roller coaster ride of our life together where my health is concerned. 😉

  3. Hope everything goes smoothly for you with this new medication and that it will make you feel better rather than worse. I know just what you mean about ice cream making things easier. I have some I got just the other day and it helps me through the rough patches when I don’t feel like eating much else.

  4. First off, thank you! You’re paving a new and better path for people that are newly diagnosed.
    I always find it informative to read what you and other readers post and relate it to my situation.
    I have been waiting a year on a diagnosis for my lungs and on oxygen almost 6 months. Whatever it is, my docs all blame lupus. I was told hope it’s not PH that the medications are expensive.
    We are moving soon which makes me sad to leave where we are because of the spiritual support, but a close friend shared she believes God is putting me in the hands of better doctors and that I will be healed.
    Sorry, for the rambling… I really enjoy visiting your page. God bless you! I pray that the doctors find new ways to help you live your life me comfortably. You truly inspire people like me that whatever this may be, it’s not a death sentence just a small bump in the road. There’s definitely good and bad with it but it takes more strength and dignity to get through it!

    • My goodness! Thank you! I know that waiting for a diagnosis can be so hard. I’m sure, if you are anything like me, that you want to know “right NOW!” what is causing your health problems. God is good. I know He gives us strength for those bumps in the road. Some of them seem to be bigger than others. I find them a true test of strength. Staying positive about living my life has been what helps me through the rough spots. I hope all the best for you. Stay in touch! *hugs*


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