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PH Awareness on TV

Monday, November 30, 2009
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!

Sunday, November 29, 2009
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.

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

Wednesday, November 25, 2009
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.


I'm very nervous...

Tuesday, November 24, 2009
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.

Sorry, I did it again!

Monday, November 23, 2009
I'm here and I'm fine. I promise I'll write more, maybe still today.
thanks for checking.
the lazy one

Three Rivers TV Show Was a Bust!!

Monday, November 16, 2009
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.


Three Rivers TV Show Tonight on CBS!

Sunday, November 15, 2009
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.


Another Nebraska Game and ANOTHER WIN!!!

Saturday, November 14, 2009
Nebraska is continuing their winning streak (knocking on wood as I type). If they win their game this next Saturday then they get to play for the Big 12 championship! The football nerds are pretty psyched here in Nebraska!

The game was in Kansas this week and was televised on ABC. But, I ended up sleeping through most of it! I did wake up in time to see the last two touchdowns. You know I must have been really pooped to sleep through a Nebraska game! The reason you ask? Having some lunch with some high school girlfriends, I answer!

It was nice getting a chance to get caught up with "the girls" lives and the happenings of their families. It's also very odd to think that we graduated over 35 years ago!! In case you were wondering, yes, I was a child prodigy. I graduated from high school when I was 6 years old. It was a bit of a challenge. But, when you're brilliant, you're brilliant....

We were suppose to go to dinner with a group of friends tonight. But I am so dragging my rear-end due to the socializing at lunch. Ever since I got sick, it seems that my body can only handle one big outing a day. It is one of the most frustrating aspects of PH, at least for me. (everyone is different...) I was especially bummed today since I had just done so well on the exercise echo. I made the assumption that if my pressures had gone down to the "normal" range at rest, then I might be able to be a bit more active. But, the numbers are still elevated with activity and I guess I just proved that test to be true...crap.

Oh well, a night at home with the "Prozac Brothers" is not a bad thing.

Asa, getting ready to enjoy a late-night snack!

Haver "sitting" on Daddy's lap!

Well, that's it for tonight. It's time for the Flolan mix!
Thanks for reading.


Working oustide my comfort zone....

Thursday, November 12, 2009
Tuesday afternoon I received a phone call from Adrienne Dern with the Pulmonary Hypertension Association in Maryland. This woman is the VICE PRESIDENT of the PHA and was calling ME to ask a favor. The PHA is helping to sponsor a 30 City Tour Medical Education Program.

One of the cities and physicians chosen to be part of this program was Omaha and MY ph doctor, Dr. Austin Thompson. The Omaha program was scheduled to be held Wednesday evening (that would be the NEXT day, Wednesday evening). The PHA representative who was suppose to give a slide presentation about the PHA and then introduce Dr. Thompson, ended up having an attack of gall stones and would not be able to make the trip. Ms. Dern told me that Rino (as in Rina Aldrighetti, the PRESIDENT of the PHA) mentioned I might be willing to help them out and asked if I would step in and take this woman's place! (I have no idea how he even knew I existed!) So, in front of a room of 40 + medical professionals I talked through 13 slides about the Pulmonary Hypertension Association and their various medical programs, organizations, etc. I then got to introduce my PH doctor. I was thrilled to be able to tell the room that due to his good care for the last 5 years, my pulmonary pressures were in the normal range at rest! Then, I was able to sit down and eat my dinner. I was so stinking nervous!! But, I'm really glad I got a chance to do it, especially since it's PH awareness month. I told the people during the introduction that they didn't realize they were going to get a 3-D presentation, including a live ph patient!

So, that's my story. Oh, in case you were wondering, I did reward myself with a Blizzard!!

I thought I'd take a moment and share a couple of pictures of "the babies" from when Chris and his puppy came to visit a couple of weeks ago.

Asa chilling....

Deeoji chilling...

And, Haver wondering, "How long do I have to lay like this until I get a treat!?!"

Thanks for reading.


Go Big Red!! Go Big Purple!!

Tuesday, November 10, 2009
As many of you know, we're a little crazy about our football in Nebraska. We won a HUGE game on Saturday! We played Oklahoma and WON 10-3!!

The place was rocking!

I was a little more excited than normal about winning this game because I had a side bet. A phriend who lives in the Washington DC area is an alumn of Oklahoma. Three years ago we had a "little bet" going. Nebraska lost that year, BIG TIME and I ended up sending gallons of ice cream to her as payment! This year I told her if (when) Nebraska won that I'd rather have flowers because I was pretty sure the dogs would get to the ice cream before I did and I really wanted to enjoy this victory! Well, today my prize arrived!!

Plus, because Nebraska held Oklahoma to only 3 points, we could take our football ticket stub to a local restaurant and get a free sandwich!

It's good to be a winner!

Another important color this month is purple. November is Pulmonary Hypertension Awareness month.

So, last night at my P.E.O. meeting (a women's philanthropic education organization) I took a bunch of the purple Pulmonary Hypertension awareness bracelets. I announced my good news about my pulmonary pressures being normal at rest and thanked everyone for their continued prayers by giving them an awareness bracelet to wear.

Tomorrow I'll be stepping way outside my comfort level to do something related to awareness month and some local physicians. Tune in Thursday to find out what I did!

Thanks for reading.


How about some good news for a change?

Thursday, November 5, 2009
I had an exercise echo done today. It is one of my least favorite tests. You're strapped to an examination table and hooked up to a cardiac machine that records your heart rate, etc. This particular exam table has bicycle pedals with a machine on top. You start pedaling and the machine records your reps and a 3 minute countdown. It also has 3 lights, a green one in the middle with yellow lights on either side. The plan is to constantly pedal, keeping the green light on. If you go too slowly the left yellow light flashes. If you go too quickly the right yellow light flashes. After pedaling for 2 minutes, the doctor tilts the table down to the left where he is sitting. You have to keep pedaling at that angle while he does an echo. The echo records all kinds of things including the pulmonary artery pressures. After a minute the doctor tilts the table back so you're laying flat again. Then the resistance is increased so that it's harder to pedal. Again, you do this for two minutes, trying to keep the green light on. At two minutes, the doctor tilts the table and does another echo. This procedure continues until the doctor gets enough info or the patient screams "UNCLE!"

I was suppose to do this test several months ago. But, I got sidelined by the "Wild Dogs of Borneo" and had to wait until the knee was in better shape, able to handle the pedaling. I was thrilled not be able to do this test, even if it was because I had a sore swollen knee! I HATE this test! Plus, the last time I took it, my pressures were elevated from the previous echo. So, needless to say, I was not looking forward to my afternoon appointment.

The doctor who did the echo is the head of the department, so, lucky me, I didn't have to wait to get the results! Are you ready for this????

Drumroll please...............

My pulmonary artery pressures at rest were 30!!

My pulmonary artery pressures with exercise were 55!!

Normal pulmonary artery pressures at rest are anything less than 25!!!

Normal pulmonary artery pressures with exercise are 30!!

The last time I had this test, my pressures at rest were 48 and with exercise they were 68!!


Rod was in the room with me while I did the test and was there to hear the results! He was so excited he told me we should order pizza for dinner to celebrate!! I had pepperoni...it was delicious!

I go to see my PH specialist on the 18th of the month. I'm excited to go and see what he has to say about this good news!

Here's Haver's version of the happy dance!!

And here's a picture of Asa, just because I don't want him to feel left out!

OK, that's all for now.
Thanks for checking in.
Thanks for reading.

AND, thanks for all of your continued prayers...obviously they're working!

much love

So, how do you like the new look?

Wednesday, November 4, 2009