Thursday, 3 March 2016

Accessibility of PAH Therapies in Canada: Part III
 - Patient Testimonials

Part III: Testimonials From PH Patients Who Are On A Treatment Not Available or Accessible in Canada

This is the third and final part of the series. The first part of the series, Access to Opsumit in Canada can be found here. The second part of the series about Treatments That Are Not Available in Canada Can Be found here.

Below are testimonials from PH patients in the US who are on inhaled PH medications that are not available in Canada. These testimonials are unpaid, and are shared by fellow PH patients in an effort to show the positive effect these medications can have for some PH patients.

"I started Tyvaso on the trial in November of 2004 at UCSD medical center. I was asked to go on the trial due to my high numbers.  I was diagnosed in April of 2004.  My mean pressure in my heart during right heart catheter was 96(normal is between 15 and 25).  I had gone years with a misdiagnosis of severe asthma.  I went in for another right heart cath to start the trial.  My numbers had come down, good news to 56 with the use of a medication called Tracleer.  While on the operating table, I took my first puffs of Tyvaso, I took nine.  I was the first patient ever to take nine puffs of the medication.  My mean pressure dropped from 56 to 46.  It was really a miracle for me.  At the end of the study my pressure was 35.  Darn right near normal.  Sadly though, I had to quit the Tracleer and start on Revatio due to liver problems.  But I have been on Tyvaso since starting.

I started going downhill a little November of 2013, I was needing evening O2, and usually I need only at night time.  At this time I was on Revatio and Tyvaso.  I had another dreaded right heart cath in March of 2014.  My doctor was happy with my pressure of 50.  But I was not.  My husband and I pressured him to add another medicine.  He decided to add opsumit, since I did so well on the tracleer and it is very closely related to tracleer without the liver complications we decided to give it a shot.  Fast forward to June of 2015.  I had an ECHOcardiogram.  I asked my doctor my "estimated" pressure as it is not as thorough as a right heart cath.  He said 29.  Wow...almost normal.  I have been feeling pretty good these days.  I am very reactionary.  I have good days and bad.  Without these medications I would for sure be in pretty bad shape of worse dead.  I have 3 adult children and a husband.  A grandson.  Also, raising my niece and nephew, ages 15 and 12."
- Julie, 48 years old
San Diego, California, USA

"I started the inhaled therapy, Treprostinil (Tyvaso), in 2011 after going back and forth with my doctors about IV therapy since my pressures were high and my physical activity was low.  They decided to try me on Tyvaso just to see how I would respond on it.  At first it was a bit difficult to fall into a routine of breathing on a nebulizer every 4 hours, but I wasn't too concerned after I started to feel better.  Before Tyvaso, I'd have a very hard time doing the simplest daily tasks like making my bed, or even showering, without getting short of breath.  Now after almost 5 years on Tyvaso, I'm able to exercise, walk long distances, go on bike rides, almost anything and everything that I wasn't able to do b efore the medication.  It has also improved my 6-minute walk test results, as well as my echocardiogram results.  Tyvaso, in conjunction with my oral medication, has improved my quality of life tremendously and I'm so grateful to have the therapy available to me."
Bay Area, California, USA

"In 2009 I was diagnosed with Familial Pulmonary Hypertension. At that time I was put on two different treatments. One was a long established drug Tracleer, and the other was an inhaler that had been FDA approved only months prior, Tyvaso. The doctor has switched my pill form of medication, but Tyvaso remains my main treatment. I always credit Tyvaso as saving my life. Before diagnosis I was not able to walk up a flight of stairs without getting out of breath, now I can go hiking and jogging. I can breathe easier with Tyvaso, if I am without it for a day I can feel the difference in my chest and my exercise capacity is diminished. "
- Raeana Rader, 28 years old

"I was diagnosed with pulmonary hypertension after I passed out while walking into work. That
was simply too much exertion for my body. I was placed on I.V. Veletri and two oral medications. They got my symptoms under control but I had terrible side effects from the Velerti. The nausea, vomiting, diarrhea and headaches were the worst. I eventually improved so much that my doctor let me do a conversion from Veletri to Tyvaso. Tyvaso gave me my quality of life back. The only side effect I have with Tyvaso is flushing. I feel like a normal human being again. Because I am no longer on Veletri, I can take my kids swimming and no longer have to sit on the sidelines. I am able to exercise on an elliptical for an hour at a time and I have recently started taking a spin class. Tyvaso is also much cheaper than Veletri and because it is noninvasive, I do not have to worry about line infections which could be costly and detrimental to my health. I feel very blessed and grateful to have Tyvaso available to me."
- Ashley, USA

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