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Nice quiet night in Nebraska...

Saturday, June 27, 2009
It's been a nice day. The weather has been comfortable (at least by Omaha standards) today and is really, really nice tonight.
I slept late, had a Blizzard

for lunch (peanut-butter-cup), took a long afternoon nap, started reading a new book, The Girls from Ames

and played outside with "Ding" and "Dong." Then Rod and I went out to Lazlo's and split a hamburger

for dinner.

Now, it's time to mix my Flolan and call it a day.
Thanks for checking in.
Thanks for reading a "not-too-exciting" blog posting.


Happy Father's Day from Haver!

Monday, June 22, 2009
Rod had a wonderful Father's Day. Chris called Scheels while on his road trip (I actually need to tell you about his road trip some time soon)and purchased a rain set for Rod for Father's Day so he can use them when the two of them go on their road trip. (Yes, I also need to write about that!)

Nick was able to come over and spend some quality time with his Dad and myself. Rod and Nick went out and ran "guy errands" and then the three of us had dinner at Firebirds.

In between all of that fun, the three of us hung around in the family room watching Haver being the goofy obese dog that he is! You'll see that he also got quite thirsty and decided he needed a sip of Rod's tea!

I hope that you all had an entertaining and enjoyable weekend!
Thanks for reading.

Happy Anniversary!!

Thursday, June 18, 2009
Yesterday Rod and I celebrated our 31st wedding anniversary! (Yes, it was very nice to have something so positive to celebrate and enjoy) The sweet "old" man sent me two dozen beautiful red roses:

And, we went out to dinner last night at this fabulous place called, "The Flatiron."

It was a beautiful evening. I love you, Rod.

Thanks for reading.

Another Phriend becomes an Angel...

Tuesday, June 16, 2009
Faithful readers of this blog have prayed several times for a young phriend named Mason. He had a transplant a couple of years ago, had about one good year before he started having trouble again. He had recently been given the "green light" to be listed for another transplant. I don't have any details, except to say that he lost his battle Sunday night.

He had written a little bio for the booklet we gave to attendees at our fundraiser last November. Here is what he wrote:

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.

I remember when I met Mason in person, after "meeting" him a year or so before on our PHA online discussion site. We were at the PHA conference in Houston this last summer. He gave me a big hug and said that he was so excited to finally meet me. All I could do was look at him and think, "He is so adorable and so strong. I feel like I'm connecting with a friend I've known for 20 years". I don't know if he was this strong, courageous and mature before he got sick, but in his 20 short years he had already become an amazing young man.

I'm asking for prayers for Mason's family and his phamily. Mason was such an incredible young man who we all looked up to and loved very much.

Dear God, we've got to find a cure so we can stop losing such amazing people.

Thanks for reading.
Thanks for praying.

A Change of Pace...

Friday, June 12, 2009
I thought I'd get caught up with some family happenings for any "faithful readers" who might still be reading this blog after being such a bad blogger for so many weeks. I very much appreciate your kindness and prayers as we all continue to mourn the loss of Cindy and Jan. I spoke with Carl Hicks this afternoon. Some of you might remember him as the guest speaker at our Phenomenal Hope for a Cure fundraiser this last November. He came to Omaha to tell the story of his daughter, Meaghan and her fight with pulmonary hypertension. She lost her fight on January 30, 2009 due to complications from a double lung/heart transplant. Col. Hicks called to tell me how sorry he was about losing two members of our support group and that he had just returned from Washington DC where he met with various groups to try to continue and increase funding for research for PH. He's an inspiration to all of us.

Anyway, let me take you on a time-warp ride back to May 17th, 2009. (Try to imagine some freaky psychedelic music and light show....)

It was a nice Sunday morning. I slept in and woke to a quiet house. I couldn't find Rod anywhere. So, I called him on his phone, thinking he might have run up to buy some coffee or something. When he answered his phone, I asked him what he was up to. He said, "Not much..." then said, "Hold on..." and all of a sudden I hear Chris' voice on the phone! That wonderful "little guy" decided to surprise me for my birthday by flying in from Chicago for the day!

We had such a great day! We met up with Nick and Kara for breakfast and then came home and enjoyed the weather.
Here's Nick:

Here is Rod. He just threw the baseball to Nick:

Here is Chris. He just threw the baseball to Nick:

And here are "Ding" and "Dong" better known as Asa and Haver trying to catch the baseball:

I think they look more like "Prancer" and "Dancer" in this one! Haver is on the left and Asa is on the right.

We finished up the day by having dinner at one of our favorite greasy-spoon Mexican restaurants, Romeo's!

Here's the happy couple, Kara and Nick:

Here's a picture of Nick and Rod. (Do they look at all like they are related?)

And, just to prove the point, there they are pretending that they are twins joined at the head:

Here is a picture of Chris and his mother who really needs to lose 20 pounds before Nick and Kara get married!!

Shortly after dinner we drove Chris back to the airport. This was definitely one of the best birthdays I've ever had!! Oh, by the way, in case you were wondering, I turned 32.

Thanks for hanging in there with me.
Thanks for reading.


Cindy will be greatly missed...

Tuesday, June 9, 2009
We had Cindy's memorial today. It was so very, very nice. Lot's of phriends and friends sent in special memories of Cindy and the minister put it all together to make a very special and very beautiful memorial service. I read a poem that was written by a phriend named Colleen. After our online PH community had several phriends lose their battle with pulmonary hypertension, Colleen felt compelled to write this beautiful poem to help her deal with her grief, which, in turn, helped all of us.

When A Phriend Becomes An Angel

When a PHriend becomes an angel,
We may feel shocked and very sad.
We may not understand why,
We may feel so very bad.

When a PHriend becomes an angel,
We mourn the life that should have been.
We hoped they’d see more years to come,
More time with family and friends.

When a PHriend becomes an angel,
We begin to have more fears.
When will it be my time to go?
Is it months or maybe years?

But when a Phriend becomes an angel,
We start to also realize.
There will no longer be the hardships,
No more pains and no more cries.

When a PHriend becomes an angel,
They are now in so much peace.
Breathing easier forever more,
Watching over loved ones with such ease.

My dear PHriend, now YOU'RE and angel.
Though we may physically be apart,
Your smile, your love your PHriendship
will keep you in my heart.

~Colleen Schnell February, 2007

**Colleen originally wrote the poem with the following ending. I changed it to the above ending (with her permission of course) to make it a bit more fitting for Cindy's service.

"To my Phriends who have sadly passed away,
So suddenly gone within this year.
Please know how much I love you,
How you have become so very dear."



Thanks for checking in.
Thanks for reading.

Cindy is gone...

Wednesday, June 3, 2009
She passed away last night at 8:30. I loved my phriend, friend...she will be missed by many.

I'll share more later.
Thanks for your continued prayers for your husband, Dean, her family and friends as everyone moves through this next stage. We need to find a cure.
Thanks for reading.