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Did you have a Very Merry Christmas?

Thursday, December 31, 2009
We had a great Christmas! But, we also had a weird Christmas! About a week before Christmas we received almost 10 inches of snow. That snow never really got a chance to melt and then...BAM!! "THE CHRISTMAS BLIZZARD OF 2009 HITS NEBRASKA!!!" Beginning on Christmas Eve and lasting until December 26th, Omaha received another 13-14 inches of snow, followed by howling winds and causing blizzard conditions. That was then followed by bone-chilling temperatures! Thankfully, Chris and Deoje drove home on the 23rd and had no weather and/or road problems.

Look at this interesting drift outside our kitchen window!

Because of all of the snow and the road conditions, many Christmas Eve and most Christmas Day church services were canceled. Our church did have the 5:00 Christmas Eve service, but, YOWZERS! It was so cold!

After church we had our usual Christmas Eve dinner with Rod's brother's family (wife, two daughters and one son) and with Rod cooking his delicious prime rib dinner. Chris, of course was here, as were Nick and Kara. So, even though it was really awful outside, it was warm, cozy and smelling good inside!

Here's Nick fixing his "gourmet" sausage/cheese/crackers snack.

Rod and his brother enjoying a post-dinner laugh. (Rod is on the right...they kind of look alike...)

Chris and Deoje entertained us with a song...."ROWL-ROWL-ROWL-ROWL"

Christmas day was very quiet. Nick had to work at the hospital and Rod got the stomach flu!! Chris used the big John Deere tractor to attempt to clear the driveway. Between the huge amount of snowfall and the high winds, we had drifts that were easily 4-5 feet high! Then, Chris, being Chris, decided he needed to go see a movie! So he took his big Ford pickup to the movie theater and watched "Avatar" in 3-D with about 7 other people in the entire theater! When he came home, the county snow plows had driven past our property and kindly pushed a butt-load of snow back into our driveway! It took him 4 attempts to get into the driveway!!

But, the snow fun didn't end there! Chris, being Chris, convinced me that I should go to another movie with him. I really don't know what (if) I was thinking! Since he had a little trouble with his truck, Rod suggested we take his giant Hummer out into the tundra! It was absolutely crazy out there! There were cars in ditches, in mediums, in front yards...pretty much everywhere but the street! At one point Chris hit a slick spot and we drove right into a 5 foot drift! He just laughed and said, "Isn't this fun? Mom, are you ok, you don't look like you're having fun!" How observant! We eventually made it to the theater and really, really enjoyed George Clooney in "Up in the Air."

It was a great movie with a fabulous message (a sort of sad ending) and an absolutely gorgeous George Clooney!

The movie was extra interesting to those of us who live in Omaha because quite a bit of the movie was actually shot here in Omaha. In fact, George's character (yes, we are on a first name basis) was actually living in Omaha!!

I would highly recommend this movie, giving it 8 puppy paws up!!

When we got home, the "lovely" snow plows decided to visit our driveway again! Even with the GINORMOUS Hummer, it STILL took FOUR tries to get up the driveway! I told Chris that my wild "Snow Bunny" days were over and promptly went inside, mixed and switched my Flolan and went to bed!!!

I'll be back later.
Thanks for checking in.
Thanks for reading.


Happy Holidays!!

Wednesday, December 23, 2009
It is Wednesday, December 23rd, about 10:30 a.m. I don't have the Christmas tree up, obviously it's not decorated yet either! I've done very little Christmas shopping and what few things I have bought, I haven't wrapped yet. I have written only ONE STINKING SENTENCE for our annual Christmas letter. So, you may be asking yourself, "If Annette hasn't gotten squat done for Christmas, why is she posting on her blog?" Well, that's a good question. Actually, right now I'm multi-tasking!! I'm posting and browning hamburger for a big crock pot of chilli! Plus, I'm watching "The Price is Right!" Wow! I'm doing three things at the same time!! My head might just explode! Crap! The hamburger is burning! But, THANK YOU GOD!! They're playing Plinko on TPIR!!!!! This is turning into quite the exciting day! OK, the hamburger is now mostly brown and the guy has just won 5 Plinko chips, meaning he could win $50,000!!! Crap! Alvin only got $1,200. Bummer!
Anyway, let's get back to the little voices in your head...."Why is Annette making chilli, I didn't think she cooked?" Well, you're right, I don't cook. But, I can make chilli. We are in the middle of a winter storm warning here in Nebraska and my baby boy is driving home from Chicago today with his dog. So, I figured if he survives the trip through this stupid storm, he'd like some of "Mom's Chilli" for dinner!

You might also be asking yourself, "Why is Annette watching 'The Price is right?'" I'm watching that brainless show because I'm so tired of listening to the adds and arguments on the radio and watching the ads and arguments on the television about HEALTH CARE!! I am not going to make a political statement here. But, I would like everyone remember that it is the holiday season, it's not a time to be arguing, yelling and screaming and pointing fingers! Go home! Bake some cookies! Eat some chocolate! Hug your kids for crying out loud!

Now to quiet that last little voice in your head, "Why is Annette blogging instead of writing her Christmas letter?" Well....I don't know! I'm just not in the Christmas spirit. It might be because we don't have our tree up yet (which is very unusual for us! Rod's just been so crazy busy the last few weeks). Maybe I'm just waiting to get Chris home. Maybe it's because I can't get the dogs to wear their antlers for a good picture. Or, this is the most likely culprit...I'm just LAZY!!

So, that's it for now.
Thanks for checking in.
Thanks for reading.

p.s. Hopefully this will be what it takes to kick my behinder in gear!!

Open House, Post #2

Monday, December 21, 2009
Good morning.
I thought I'd go ahead and post some pictures from our party. In case you were wondering, we kept the dogs away from the action. We're not sure which we were most worried about....them eating all of the food or them jumping on everyone and knocking over anyone who weighed less than them!

One of the many things that I love about this party is that it gives people a chance to get "caught up." This is a picture of Chris' friend Josh, who is hugging the Mom of another one of their friends named Jason. Jason lives in a different state now, and won't make it back to Nebraska until later in the holidays. But Josh got a chance to get caught up on Jason's life by visiting with his Mom, Paula!

This good looking group shows my "first grade team" when I taught the last couple of years at Black Elk. Not only did I get to catch up with some good friends, but a couple of them have children and brought them along, so, I also got to see how their own children are doing, how much they've grown, etc!

Then, there are those very special moments when we get to meet a new member of a family. At last year's Open House, the couple in the picture was telling us all about their upcoming trip overseas to bring home their new daughter. This year, we got to meet their beautiful new daughter. I'm thinking this beautiful little girl realizes how lucky she is to have such a loving family, even though she had to come all the way from Ethiopia to find them!

But, I have to admit, this picture shows my favorite part of the day! I was able to introduce my favorite Minister to my favorite Rabbi!

OK, I thought I'd share one more little tidbit that has nothing to do with the Open House. I've FINALLY finished my first little knitted cap (at least one that I'm willing to show to the general population!

OK, that's it for now. The temperature is up to 29 degrees! I'm going to head on out and get some errands done.

Thanks for checking in again.
Thanks again for reading.

So, I decided that if I waited until I was completely rested....

Saturday, December 19, 2009
I'd probably never write another post to this blog! So, as long as you (the reader) understands that I'm not at my 100% smart-aleckie self and might, potentially say something nice about someone, then we're good to go.

So, just a week ago, we held our 11th annual "Markin Holiday Open House." This was a party that Rod's Mom did for some 38-40 years! Every December Hetty Jane (Rod's Mom's name was, "Hetty Jane Marie...very pretty, I think) would send out handwritten postcards inviting friends and family to stop by her house for some coffee, apple cider, little sandwiches and cookies and a chance to just sit and visit with people they might only get to see once a year when they stop at Hetty Jane's party! (Please note the very lengthy run-on sentence...it's not my fault...it's my tired brain and tired body's fault...) Plus, the party lasted all day so, if you had a busy schedule, you could get a few things done, then stop by her house for coffee and treats! Rod's parents lived in Lincoln. Hetty Jane made ALL of the food for her party! She would bake for weeks! She and Bud (Rod's Dad) would make up these delicious little chicken salad and ham salad sandwiches. She went to this neighborhood bakery every year and have them make up these adorable little sandwich buns, just for her party! Bud and Hetty Jane lived in a "raised ranch" style house, meaning the ground floor was actually the garage and the basement. You'd have to go up a set of stairs outside to get to the "first floor" or do the same inside from the basement to the first floor. It was always a very, very special time to visit Bud and Hetty's house the days before the "Open House" because they used their cool basement and garage to store many of the delicious treats that would be served during the party! Sometimes she would come looking for us because she would see us drive up but we hadn't made it upstairs yet to say hello yet! My mother-in-law was an incredible cook and baker!

As Hetty Jane grew older and tired) unlike her beloved daughter-in-law who seems to be growing younger and tired...ha....ha....ha...) she decided to stop doing her annual Christmas party. But, she didn't anticipate how much she would miss having this fun event. So, the next year Rod and I decided to have Hetty Jane pass the torch to us and we started having a Christmas party in Omaha for our friends and family. The first few years, Hetty Jane would help me do most of the baking and cooking. She also passed on her beautiful little glass plates and coffee cups for us to use. Bud and Hetty Jane also became our official door greeters! It was so much fun for everyone! They got to see some of our friends, some of their friends and meet many new people!

After Hetty Jane passed away, Bud became our one and only greeter. All of our friends were so good to him that first Christmas. Anyway....

So, 11 years later we're still having our "Annual Open House!" Now, we take turns being greeters and sometimes friends will just hang out at the front door greeting other friends!

OK, I started this post on Saturday afternoon. It's now 9:00 Sunday night. I've got to go work on mixing my medicine. I'm just going to go ahead and post this and I'll come back tomorrow, write some more and add some pictures...
Sorry. I just don't know where the time goes....

Thanks for checking in.
Thanks for reading.

The Definition of Tired...

Monday, December 14, 2009
Friday night...two parties
Saturday.... Open House at our Home
hours: 9 a.m. to 6 p.m.
number in attendance: around 300
Monday...sleeping, but waking up enough to post this exciting bit of information, then back to sleep....

I'm a pooped puppy dog...

Thanks for checking in.
Thanks for reading.


Thursday, December 10, 2009
Yes, I know it's December and YES I know I live in Nebraska. But, when we get the "one-two punch" we have every right to WHINE!!
First came the 12 inches of snow (yes, that's ONE FOOT OF SNOW!!). Then came the "Polar Express" as our local weather guy lovingly calls our present temperature trend. Today we made it all the way up to 12 degrees!! WHOO-HOOOO!!

If I was still teaching, I would be thrilled because the schools have been out for the last three days! (I'd also be freaking out because we didn't have school for three days which would have meant that my lesson plans were all screwed up, testing that needed to get done before Christmas break would be now behind schedule and the kids at home would have probably spent the last three days finishing off the Halloween candy that their Mom's had stashed away!)

I did venture out today though, for a very special experience that also ended up having a nice surprise stuck inside!

I'm guessing the majority of you have read, "The Last Lecture."

Randy Pausch was a computer science professor at Carnegie Mellon University diagnosed with pancreatic cancer. His lecture became known world wide. With the help of writer, Jeffrey Zaslow, he was able to put his lecture into book form and published before he passed away. The book immediately became a best seller.

Several months ago, Nick and Kara (my DAUGHTER-IN-LAW!!!!!:) )gave me the book, "The Girls from Ames..A Story of Women and a Forty-Year Friendship" written by Jeffrey Zaslow.

It is such a fabulous book!

Well, today Jeffrey Zaslow and 8 of the "Girls from Ames" came to Omaha to talk about the book! They came as part of a fundraiser for the Omaha Hearing School.

The event was fabulous. But, here's the surprise that I found "stuck inside." When I went to the little "check-in" table a woman says, "Mrs. Markin!" I looked at her and it was the Mom of a little girl I taught in first grade about 20 years ago! Her daughter was hearing impaired and was being mainstreamed into a regular first grade classroom. Well, that little doll was so brilliant she just blossomed in first grade! I asked her how Megan was, what she was doing, etc., etc, etc. Polly (her Mom) said, "Megan is here!! She's speaking at the luncheon! You must go in and tell her hello!" What a treat! I went in and found this beautiful young woman who told me all about her great job and how she just bought her own home! It was such a joy to get to see her!

By the way, Jeffrey Zaslow just finished writing another book along with Capt. Chesley "Sully" Sullenberger called, "Highest Duty...My Search for What Really Matters"

Mr. Zaslow spoke a bit about the book today and it also sounds like a fabulous read.
OK, this post is really kind of fragmented, hit and miss, not very smooth. But, I'd really like to post it tonight and I really need to clean up the kitchen. So, I'm going to just have to call it "good enough."

Thanks for checking in.
Thanks for reading.


I really should be going to sleep, but...

Tuesday, December 8, 2009
we are having quite a beautiful "blizzard" here tonight in the midwest. We have about a foot of snow on the ground and now the winds have picked up, blowing about 40 mph's making for some pretty amazing drifts and designs on the windows.
I received some sad news this morning. I found out that a former first grade student made the decision to end his life yesterday morning with the help of a gun. I have no other details. He was in my class 14 years ago. He was such a loving, strong, smart and capable young man. I know it was a long time ago, but he was such a happy young little man. It's so hard to imagine what kind of tragedies and hardships must have come his way leaving, at least in his young mind, that dying was the best way to solve the problem. I knew his parents, I knew his siblings. They were the family that, as a teacher, we would look to for a positive example of a good, core, strong and loving family. Yet, something went wrong for him. I pray that God understands his source of pain and even though God was unable to help him on Earth, that He will now be able to help him in Heaven, without all of the distractions and disappointments living on Earth brings to maturing young men.
If you are reading this and are the praying kind, please pray for his soul and for his families broken hearts.

A snowstorm is such a beautiful gift of nature. It covers everything with a thick blanket of snow,covering all the ugly messes. Sometimes we really need to identify those messes and clean them up before they get covered up so they can be fixed, be delt with. Then when the snow melts, we can once again see the other beautiful gifts given to us by God.

Thanks for checking in.
Thanks for reading.

The Holidays are quickly approaching!

Monday, December 7, 2009
We had a nice turnout at our PH support group Christmas party on Saturday. We had some great food, fellowship and presents!! You can't beat that! It was so nice to see phriends, friends and family together having such a great time. It was also nice for our caregivers to have time to visit with other caregivers and relax a bit.

Carol (in the middle) is our support group leader. As you can see, she does a great job of making everyone feel welcome to the party!

Jessica (in front) couldn't wait until we did our present exchange game!

Lynne (on the left) has such a supportive sister!

Paula (left) and Barb both said, "I don't like having my picture taken!" I told them, "Why do you suppose I'm always holding the camera?!?"

Dean and Karen enjoy getting caught up on each other's lives.

Lynne and Ed share how they've been feeling since the last meeting.

Carol is "sharing the love" with PH nurse, Judy!

Rod was "thrilled" to have picked some lovely candles for his present!

Roy ended up with a "beer maker." I'm not sure Frances, his wife, thinks it's such a great idea!

Dean wasn't sure what to do with his "colorful" socks and gloves that he picked! He was thrilled when someone "stole" them from him and he got to pick something else!

Karen, on the other hand WAS thrilled when she picked this book out of the presents. But, her happiness didn't last very long. Someone else "stole" it from her and she had to pick another gift!

Bob was THRILLED when he got the chance to steal the "Keep you Coffee Hot" mug from someone!

For a bunch of sick people, we are kind of a cut-throat group!!
Actually, this is the most amazing, energizing, loving and motivating bunch of people I have even known.

Thanks for checking in.
Thanks for reading.

Well, winter finally found Nebraska!

Thursday, December 3, 2009
We have been spoiled with great weather this fall-winter season. Today we were reminded that it is December and that we do live in Nebraska. The temperature has been hovering in the mid 20's all day with the wind chills in the teens. I've discovered (as have many other phriends) that cold weather and PH do not make for a happy pair of lungs. I personally do OK until the temps and/or wind chills get in the 30-32 degree area. I wasn't really prepared for this since it has been in the 50's for the last week or so!
But, when you're a lazy bum, it's not difficult filling up your daily schedule when you're stuck inside.
8:30 a.m. Get up
11:30 a.m. take a nap
12:00 p.m. Watch "All My Children"
1:00 p.m. Watch "One Life to Live"
2:00 p.m. Eat lunch or cereal or whatever's sitting around.
3:00 p.m. Take a nap....
WOW!! No wonder I have to go to bed early! What A grueling schedule!!!!

Actually, I did some Christmas decorating today. We are having our Pulmonary Hypertension Support Group Christmas Party!" here on Saturday. We'll only have about 30 or so phriends and phamily members, so it will be a nice gathering. My phriend Colleen showed us how she jazzed up her place for Christmas one year. So, maybe I'll show you a few pictures.

This is the Nativity set that my family had when I was a little girl.

I read about this little Christmas decorating trick a few years ago:

In all of the framed family photos, put a Christmas family photo in the frame behind the one you look at year round. Then, at Christmas time, you just switch the Christmas photo with the "normal photo." I LOVE it!

I love "discovering" my treasured memories every year!

Yesterday I went to our local yarn shop and said, "Please show me the error of my ways!" I have been trying to knit a hat using "needles in the round." Everyone that I know who knows how to knit says it's so easy. But, my brain was screaming at me "You can't teach an old dog new tricks!" After 90 minutes of one-on-one instruction, I left with what I came with...a bunch of yarn and some needles. Actually, I did come home with a new pair of circular needles and a $4.00 hat pattern. Well, determined knot (get it????KNOT?!?!?) to be outdone by a ball of yarn, I sat down with a new ball of yarn and tried again. I think I might have finally figured it out! If I ever finish it, I'll be sure to take a picture and show it to you. I'd really like to be able to knit hats for little babies and kids who need them. But, we'll see. I might be better off going out and just buying some knit hats!!

In other news of the weird...
Last week I experienced 3 nose bleed in 4 days. Now, I know that many people get nose bleeds. People on oxygen are at a much higher risk for nose bleeds. I've never, ever had nose bleeds. But, a few months ago I had one, took myself to the lab, had them draw blood for my INR (which is a test to determine the clotting factor in your blood. People with PH are at a higher risk of developing blood clots, so most of "us" are on blood thinners). Well, no surprise, my INR was higher than it was suppose to be. So, we adjusted the meds and all was well with the world.

So, when I ended up having three fairly disgusting nose bleeds, I took myself to the lab and expected the numbers to be elevated again. But, my numbers were actually low. So, I'm going to an ENT doctor tomorrow. I'm sure it's no big deal, but, I just wanted to share how excited I am to spend a chunk of my day seeing yet another doctor!! (There was some serious sarcasm there if you didn't notice)I haven't had any nose bleeds since I made the appointment...of course...more sarcasm....

Other news of the weird...
Some faithful readers might remember that about six months ago I started fighting a rash on my face. I've been to various specialists, each one coming up with a different "guess" as to what was the problem. The rash would come and go, get worse and get better. I woke up last week and SHAZAM!! There was no rash blotching my face! It was gone for three days and then I woke up on the 4th day and SHAAAA-CRAP!!! The rash was back and it was gross! Now the experts (including my beloved husband) think they have a really, really good "guess." They think I've developed an allergy to one of the three thousands medicines I take each day. The three days when I didn't have the face of a teenager, I wasn't taking one of my meds because I ran out and it was too soon for the insurance company to OK a refill. The rash returned the morning after I took the refilled med the night before. So, now we are doing an experiment for a few days. Wish me luck because I'm really tired of looking like the before picture in an ad for acne or other disgusting rashes.

One more story from the "news of thew weird..."
I think I pulled a muscle in my left buttock....that's all I have to say...it really hurts...anyone have any sympathy for me? Anyone??? I didn't think so. Oh well.

Thanks for checking in.
Thanks for reading.


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.