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Excellent news on our phriend Mason!!

Thursday, November 20, 2008
"Mason is improving a little every day! He's being weaned slowly off the sedation, so he has been much more alert. He is still on the ventilator, but he is starting to breathe a little on his own. The respiratory therapists are working with him every day. He is able to respond to questions by shaking his head yes or no. His doctor is very pleased with how Mason has been improving."

Thank you all for your continued prayers! They are a mighty tool!

Thanks for reading.


PH Awareness Blogging Day!

Tuesday, November 18, 2008
Please grab a cup of coffee and click on the following link. You will enter the most amazing stories of the most amazing phriends and caregivers.


I thought I'd share some specific info on the medicine that I use that allows me to function and live a somewhat "normal" life. I remember how poorly I felt before I started on Flolan. As many of you know, I was diagnosed with Primary Pulmonary Hypertension on June 29, 2004 (this also happens to be my beloved husband's birthday). I began using Flolan two weeks later. With Flolan therapy I was able to move from a Class 4 to a class 3 and sometimes even a class 2!

Class 1:Patients with PH but without resulting limitation of physical activity. Ordinary physical activity does not cause undue dyspnea or fatigue, chest pain, or near syncope.

Class 2: Patients with PH resulting in slight limitation of physical activity. They are comfortable at rest. Ordinary physical activity causes undue dyspnea or fatigue, chest pain, or near syncope.

Class 3: Patients with PH resulting in marked limitation of physical activity. They are comfortable at rest. Less than ordinary activity causes undue dyspnea or fatigue, chest pain, or near syncope.

Class 4: Patients with PH with inability to carry out any physical activity without symptoms. These patients manifest signs of right-heart failure. Dyspnea and/or fatigue may even be present at rest. Discomfort is increased by any physical activity.

An infusion pump infuses (pumps) Flolan into my system through a central line.

I was going to actually take a picture of my site today, but I couldn't quite figure out how to do it modestly. But, this drawing will give you an idea.

My site is located on the right side, about 8 inches down from my collar bone. I also have two lumens (tubes with connectors) so that if there is a clog in one line, I can get the Flolan going through the other. That's important because Flolan has a short "half-life." That means that it only stays in your system for a short time. I can't go for more than 8-10 minutes without Flolan before I could possibly have a rebound effect and go into heart failure. Flolan also needs to be cold in order for it to work effectively. So, I always have a couple of ice packs right next to the Flolan pump in the fanny pack that I always wear around my waist.

I also have to always have a cassette of Flolan mixed and ready to be used, along with an additional Flolan pump in case of emergencies. I actually had my pump fail once at the end of the day during my last year of teaching. My teammate, principal, nurse and I had practiced what to do in an emergency. I can proudly say that we all stayed calm and I got everything switched out in less than 10 minutes.

Every night between 9-10pm, I mix my Flolan for the next day. I first take the cassette out of the refrigerator that I mixed the night before. I hook that up to my extra pump and then switch out the pump I used since last night. Then I mix a new cassette that I will have in case of an emergency. If I don't have an emergency, then that cassette is used the next night and so on and so on....

Thankfully, the only time I've had "an emergency" was that one time at school in 2005.
The picture above shows all of the things I need to "mix my medicine" every night. You may notice the neat little tray with the holes cut to hold the bottles of medicine and the cassette. My beloved husband made this little tray to help me with my mixing. Without it, I was having a hard time keeping everything from falling over.

I am so very grateful that Flolan is an effective treatment for me. But, along with the medicine comes the side effects. The side effects that I experience the most are flushing (I always look like I have a very healthy glow to my cheeks and red rashes on my chest and arms), headache, jaw pain (this is an odd one) and joint and muscle pain. These side effects are manageable with pain meds (except of course for the flushing).

Well, I think that's it for now.

No, I forgot something very, very important. I would like to thank you all for your continued prayers for our phriend, Mason.

I can happily report that Mason has been opening his eyes a bit, he also sticks out his tongue, and he's moving his arms. His mom has had to lay on Mason's arms because she just knows he'll rip out the ventilator tube if he gets a hold of it. They think that is the biggest reason why he is still sedated.

Mason's doctors have said that Mason had internal bleeding in his lungs, which is now stopped. The only conclusion they have come up with as to why this happened is that Mason had a very bad reaction to the chronic rejection treatment he received last Monday and Tuesday. They do not know which part of the treatment caused this reaction, but they are working to figure that out. However, Mason will not ever have the photo again.

Mason's doctor is optimistic that Mason will pull through this, but it's going to take a very long time because Mason's lungs were damaged.

Mason's mom has also said that the doctors are discussing the possibility of Mason being listed for another transplant. He'll need to pull through this and gain some strength, but it sounds optimistic.

So thank you, thank you, thank you for your prayers for this special young man. Continued prayers for healing are greatly appreciated.

My dear sweet husband saw my tray of supplies laying out tonight and thought he'd surprise me and mix for me! I caught him in the act! What a sweetheart!

Thanks for reading.

Sunday night...just checking in.

Sunday, November 16, 2008
No news on Mason...I'm hoping that no news is good news....

Yesterday was a really busy day. In the morning, I went up to church to meet with the "Knit Wits" which stands for the knitting witnesses. We get together once a month or so and work on prayer shawls and just visit away. It's a very nice fellowship time. In the afternoon I went to a baby shower for a friend. I hadn't been to a baby shower for a long time! It was lots of fun. In the evening we went to a friend's house to watch the Nebraska football game (actually watched Nebraska kick K-State's butt! It's about time! It looks like our Huskers are getting back on track!) and to have dinner. So, as you can guess, by the time we got home, I was pooped!! My dear, sweet husband was kind enough to mix my Flolan for me so all I had to do was switch out, take all of my oral meds and fall asleep on the couch!!

Thanks for the prayers for Mason.

Thanks for reading.

Prayers please for a phriend...

Saturday, November 15, 2008
Mason, you've prayed for him before and he got better.
This is the latest info I got off the PHA discussion boards:

"Mason has been MIA for a couple days, so I (a phriend named Colleen) called his mom again tonight to see how he is. He's not good. He is in Kaiser LA ICU again, intubated and sedated. His mom said the docs do not understand what happened. They said he wasn't in rejection. They also said they didn't think he was going to make it overnight (this was Thurs night). Today (Friday), Mason has shown some signs of improvement, but still has an incredibly long road to go. His entire family is in LA right now, and they are all really shook up. Please pray for Mason!! Or have good thoughts for him if you aren't the praying type!! He really needs them right now!! I will keep you updated when I get news!!"

Mason's story and picture were included in the "Phriends' Stories" booklets that were passed out at the 3rd Annual Phenomenal Hope for a Cure fundraiser. Here is his story:

My journey began late in 2005. I was 17, working and going to school full time. I started to notice shortness of breath in the mornings. I thought I was just getting out of shape and didn’t worry too much about it. After a few weeks one morning I was pushing out quads, (I worked at a off-road shop) and became very short of breath and passed out. I was rushed to the ER. They told me I had pneumonia and sent me home on antibiotics. I took about a week off work and rested but I didn’t really feel any better. I went to a few different doctors, but they didn’t know what to do or what I had. One thought it was asthma and the others weren’t sure. One doctor scheduled an echo and x-ray. But I couldn’t wait any longer. So I went to a hospital in CA. It took about a week of tests and evaluations to get a diagnosis of PPH. I was sent to a PH specialist in Los Angeles for a right heart cath. The doctors discovered that my PH was severe and that I needed start on Flolan immediately. I was told that it usually works well and quickly. I didn’t mind mixing or any of the stuff that goes with Flolan. The problem was I had PVOD (pulmonary veno occulsive disease).
PVOD is hard to treat. It clogs the veins leading from your lungs to your heart, and causes your pulmonary arterial pressure to rise just like any form of PH. The Flolan lowered my PAP but made my PVOD worse. By February I was bed-bound. If I had to walk more than 100 feet I had to use a wheelchair. I was listed for transplant a few months later and waited 11 months for my transplant. After the transplant I had a great recovery and was a full time walker in the first month. I had 5 months of greatness, no problems at all. Then I got hit with rejection, fungal infection, flu and pneumonia. That has slowed me down a bit and there are still some bumps. But I’m still glad I got it. If I get a few more quality years, I’ll be happy.

Thank you for your prayers.


Hello, hello, hello, hello...

Friday, November 14, 2008
Not much happening. It's Friday and I'm really pooped! I had a doctor's appointment on Wednesday with my pulmonary hypertension doc. Today I had an appointment with my endocrinologist(they take care of my panhypopituitarism...pituitary gland died no idea why and my thyroid doesn't work...) and in between I've had my blood drawn several times, a chest x-ray done and I did a 6 minute walk. The 6 minute walk is a low-tech test done to check on how someone with pulmonary hypertension is doing. When you do a 6 minute walk, you're hooked up to a little pulse oximeter that tells what the oxygen levels and pulse rates are. You walk in a specific area that has been measured so that you know how many feet you are able to walk in 6 minutes. My oxygen levels stayed in the high 90's and my pulse stayed in the 95-110 range, which is also good for a ph person and I was able to walk just a bit over 1,200 feet, which is great! I did talk to both doctors about my increased level of tiredness. I just seem to wake up tired and, except for a couple of adrenaline induced moments, I continue to be tired during the day and usually need to take an afternoon nap. The overall consensus is that my body is probably still trying to completely heal from the pneumonia and over-doing it with the PH fundraiser. My PH doctor did have me increase my Flolan, which has helped with the rapid heart rate and feeling of being light-headed when walking. But, along with decreased symptoms, comes increased side-effects. So, my muscle/joint pain and jaw pain are worse along with the "lovely" chest-wall discomfort and headaches. But, that will get better with time.

Rod and I decided to stay in tonight. The weather is stinking cold, wet, windy and just really yucky! There's lots of good TV and I've recorded several shows and movies on TIVO!

Right now both of the 4-legged "boys" are sound asleep and snoring. I think it's time to toast a bagel and watch "All My Children!"

Thanks for reading.

Movie and a Book Review Time!

Saturday, November 8, 2008
I went to see a fabulous movie today, "The Changeling" with Angelina Jolie. I didn't realize that Clint Eastwood was the director until the movie credits rolled at the end, but I should have known. What a great movie! It was based on a true story that happened in Los Angeles, cira 1928. I don't want to give too many details because I highly recommend you seeing this movie. But, I will tell you that the main storyline revolves around the kidnapping of a little boy and the corrupt LA police trying to cover their own butts by not doing a good job in solving his case. I give it 8 puppy paws up!

Now, for the book...
One of the women in our P.E.O. group started up a book club. Our first book "assignment" was "Chasing Harry Winston" by Lauren Weisberger. She is also the author of "The Devil Wears Prada." I never read that book, but I really liked the movie. Now for the review...well...the cover was very pretty and shiny, I really, really liked the cover.

OK, I did like the story a bit also. It follows three, almost thirty-something women who live in New York and love the New York life and all it has to offer. I guess I should have taken a little time trying to figure out what the book was about before I started reading. I thought "Harry Winston" was a man. Rod told me it was a jeweler...enough said.

I thought I'd also show you a picture of Asa, the "lap" dog.

And, just so he wouldn't feel left out, here's a picture of Haver, "Mr. Fatty-Fatty-Bo-Batty."

Thanks for reading.

p.s. Don't forget that November is Pulmonary Hypertension awareness month. I'm very aware. In fact, I'm so aware that I'm going to go mix my Flolan for the night.

This is what my pump looks like. I'm not holding it, I found this picture online. I'm going to try to get you informed and all "schooled" in Flolan and pulmonary hypertension before awareness month is finished.

Thanks for reading, again.

Pulmonary Hypertension Awareness...Political Style!

Friday, November 7, 2008
This was presented to our local support group leader by the Mayor of Bellevue, Nebraska. Bellevue is a suburb of Omaha, Nebraska (click on the proclamation for a close-up view)

This was presented to our local support group leader and two support group members (Pam. our support group leader Carol, and me) yesterday by the Mayor of Omaha, Nebraska. (click on the proclamation for a close-up view)

This was presented to our audience at our 3rd Annual Phenomenal Hope for a Cure fundraiser which was held on November 1, 2008.(click on the proclamation for a close-up view)

Happy Pulmonary Hypertension Awareness month!
Thanks for reading.


One More PH Event!

Wednesday, November 5, 2008

Tomorrow afternoon three people (including myself) from our local support group will meet with the Omaha mayor, Mayor Mike Fahey and receive a proclamation for the month of November to also be Pulmonary Hypertension Awareness month in the city of Omaha. I've decided that I'm stopping at Dairy Queen on the way home, getting a Blizzard and then taking a very, very long nap!

So, did you think I was abducted by aliens?

Tuesday, November 4, 2008
I can't believe it's been so long since I updated this blog! As some of you know, I've been a little preoccupied with our 3rd fundraiser for pulmonary hypertension. I was very pleased with how well things went. Here is a copy of what was written in the newspaper:

Nebraska's first lady, Sally Ganem, served as honorary chairwoman of the third annual "Phenomenal Hope for a Cure" fundraising event Saturday morning at the DC Centre.

The event, held to raise awareness of and funds for finding a cure for the rare and sometimes fatal lung disease pulmonary hypertension, drew more than 150 people and raised nearly $30,000.

Ganem presented a proclamation, signed by Gov. Dave Heineman, declaring the month of November to be Pulmonary Hypertension Awareness Month in Nebraska.

Col. Carl Hicks, chairman of the Pulmonary Hypertension Association's board of trustees, spoke about his daughter Meaghan's personal journey, from being diagnosed with pulmonary hypertension in 1994 to having a lung and heart transplant in February 2007.

Brandi Petersen of KETV-Channel 7 served as the emcee, with Monty Meusch as auctioneer.

Pulmonary hypertension causes continuous high blood pressure in the pulmonary artery in the lungs, resulting in an enlarged heart, which may lose its ability to pump. The disease has been diagnosed in more than 100,000 Americans and thousands more may have it but are misdiagnosed or never diagnosed.

Annette Markin, one of the organizers of Saturday's fundraiser, taught in the Millard Public Schools for more than 25 years before being diagnosed with pulmonary hypertension in June 2004. She was misdiagnosed several times in the preceding two years.

"The No. 1 thing we hope to accomplish with this fundraiser is public awareness," Markin said. "Raising funds to help find a cure is extremely important, but for me, the money takes a back seat. The more people we can reach and educate in the greater Omaha area, the more people who can be properly diagnosed.

"An early diagnosis means better treatment, which in turn means that these people have a chance to continue living their normal lives for as long as possible. Any money we are able to raise will be great, but raising awareness is my main hope."

For more information about the disease go to www.phassociation.org.
* * *

And here are some pictures:

Here are three members our Periwinkle committee:

Two PHriends who are also on the Periwinkle committee:

The man in the middle had a double-lung transplant 18 months ago! The other man is my PH doctor, Dr. Austin Thompson.

"Me and My Shadow!" Actually, me and my sister!

My husband, Carl Hicks, Sally Ganem (Nebraska's First Lady) and myself.

Sally Ganem brought along the proclamation signed by her husband, the Governor, proclaiming that "November in Pulmonary Hypertension Awareness Month in the state of Nebraska!" It was also wonderful to see the increased participation by our phriends, both local and from all over the United States and Canada! Last year we had 14% of the silent and oral auction items donated by phriends. This year it increased to 33%!

Thanks so much for reading!