PH Awareness on TV

I've included a link to take you to the Fox 42 story and video. I'm really happy with how well it turned out. The reporter and the photographer did a good job getting all of the important info in a 2 minute segment.

Woman Survives Odds After Devastating Diagnosis

Pulmonary Hypertension Story on TV Tonight!

If you are in the Omaha area, Fox 42 will be airing the story on pulmonary hypertension they did with interviews with my ph doctor, Dr. Austin Thompson and myself. It is to be aired sometime during their 9:00 program.
I'm going to try to remember to record it and, if it's any good, I'll try to figure out how to post it on here sometime.

I'll be back later for a "proper posting."

Thanks for checking in.
Annette

I should never try to write a blog post after I've...

taken my nightly medicines! I'm pretty sure there were more misspelled words in that last entry than correctly spelled words! Plus, it kind of didn't make sense...at least a lot of sense in terms of what I thought I had written and what I actually wrote...Oh well....drugs...you've got to love them!!



Anyway, I think the interview with the television station went well. They think it might be aired on Sunday evening. We basically talked about Pulmonary Hypertension, what it is, how I was diagnosed and then we talked about the medications. I'm on three medications for Pulmonary Hypertension (actually I'm on over a dozen different medications, but three of them are strictly for PH). One is coumadin, a very inexpensive medicine that is a blood thinner. People with PH are prone to developing blood clots, so it's necessary to always take a blood thinner.



The second drug is Flolan. That is the IV medicine that is pumped into my system through a central line. It runs 24/7.



This medicine is runs around $10,000.00 a month. Rod's insurance does NOT cover Flolan. But, my insurance with school does. So, I was very relieved when we found out that I could continue getting my insurance even after I had to quit teaching.

The third medicine I take for PH, and the one that was really the focus of the television story is Revatio.



As I mentioned last night (in my drug-induced state), Revatio is a vaso-dialator. It relaxes the blood vessels so that the blood can run through your system with less resistance. When you have PH the cells in the pulmonary artery duplicate and grow in strange ways (similar to cancer cells) that cause the pulmonary artery to thicken and stiffen. Medicines like Revatio relax that artery, along with the other arteries in the body. That's why Revatio, in it's other form as Viagra, does it's job for men with ED.



The main difference between Revatio and Viagra is the color and the amount of medicine in each pill. Viagra comes in 25 mg doses and Revatio comes in 20 mg doses. According to my local pharmacist, Viagra runs around $20.00 a pill. Revatio costs $10.00 a pill. I take 3 Revatio pills a day. I can't get my insurance company or Rod's insurance company to pay for the Revatio. If I was a man and had ED, both insurance companies would pay for it. In fact, if I was on Medicare and/or Medicaid, I've been told that the Viagra would also be covered. I was on a study for double blind study for Revatio that then went into a two year long-term study where I was provided Revatio for free for a period of time. We discovered that the insurance companies wouldn't cover the Revatio when the study ended. My doctor's office worked very hard to get me on a different study that is providing Revatio to me at no cost for a full year. Hopefully by the end of that year, one of our insurance companies will have come to their senses.

OK, that's a lot of writing I did tonight!! I really need to get some things done. I'm hoping to get back into being a better poster. I've got lots of things to share, including going to the Capitol in Lincoln and meeting with the Governor regarding Pulmonary Hypertension Awareness month.

But, for now, I've got two little blond-headed, four-legged wild men jumping on the back door.





Have a great evening and thanks for checking in.
Thanks for reading.

Annette

I'm very nervous...

A reporter from Fox 42 and a cameraman are coming to my home this morning to interview me about pulmonary hypertension and the high cost of medicines needed to treat the disease. One of my medications is a syldenaphil (I'm pretty sure I've screwed up that spelling. ) It's a vaso-diolater. It helps to keep the pulmonary artery relaxed and diolated to hopefully keep the pressures lower which would then cause less stress to my heart. It is the same medicine used for erectile dysfunction. When it is used for "ED" is is called "Viagra." When it is used for pulmonary hypertension it is called, "Revatio." Viagra comes in 25 mg doses and "Revatio" doses come in 20 mg pills. All insurance companies including Medicare pay for men's Viagra. Neither one of my insurance policies, my own policy and/or my husbands policy that he gets through the University of Nebraska Medical Center will pay for the Revatio. The Revatio pills cost $10.00 a pill. I have to take 3 pills a day, every day to help keep my pulmonary arteries open, giving me a better quality of life.

So, I'll fill in more tomorrow. I need to get to bed. Wish me luck.

Thanks for checking in.
Thanks for reading.
Annette

Sorry, I did it again!

I'm here and I'm fine. I promise I'll write more, maybe still today.
thanks for checking.
annette
the lazy one

Three Rivers TV Show Was a Bust!!

Now if anyone actually watched it, we need to write complaint letters to the station and tell them what a horrible job they did! First off, they had a 22 year old man. Now, granted, some men do get PH. But, the average PH person is a middle-aged woman. Plus, babies are sometimes born with the disease. So, in terms of awareness and helping viewers understand if their symptoms might be PH-related, they blew that. Speaking of symptoms...the man was not on oxygen, he was very active, (playing in the leaves with his brothers and sister...)he had no chest pains, he passed out and then wheezed like he was having an asthma attack! Then, the doctor at the hospital told him he needed to have a lung transplant. The guy refused because he needed to stay home to take care of his brothers and sister. So, the doctor said he would write a prescription, but he didn't say what it was. The writers could have used this moment to talk about Revatio which is one of the oral meds that are used! I could go on and on but, the bottom line is that it is really, really disappointing to see a completely wasted opportunity to teach thousands and thousands of people of PH. ARG!!!!!!!



Oh well, thanks for trying.

annette

Three Rivers TV Show Tonight on CBS!

This is a medical drama about a transplant hospital. I heard through the "PH Grapevine" that the show tonight was going to have at least a little part of the story about pulmonary hypertension. The show is suppose to be on at 8:00 p.m. on CBS. But, there's football on all day, so, it will most likely be delayed. But, if you can catch it, that would be great! Here's what is written about tonight's episode:

"A Car crash victim (Mandy Patinkin) dying of Lou Gehrig's disease refuses medical treatment so his organs can be used to help others; a foster parent with pulmonary hypertension refuses to be admitted to the hospital."

I have no idea if this story will be accurate or even interesting. But, I thought I'd "spread the word" just in case it was any good.

Thanks for checking in.

Annette