Home | Posts RSS | Comments RSS | Login

Merry Christmas to you all!

Wednesday, December 24, 2008
Nick and Chris are both home! Chris left Chicago yesterday with his dog, Deeoje, along with a snowstorm that seemed to "ride along" with him all the way home! It took him 12 hours instead of the normal 8 due to the weather and accidents. So, praise God that he made it home safe and sound! Nick does not have to work tonight! Praise God once again! So, I need to get my butt in gear because the 4 of us are going to the 5:00 service at church. Then Rod's brother, his wife and their 3 kids will come over for Christmas Eve dinner! Nick is staying over, but he does have to get up very early to go into work to do rounds. But, tomorrow Rod's brother's family and my sister and her girls will all come over for Christmas day lunch and presents! Then, my sister and her girls, Rod, Nick, Chris and myself will go to our annual Christmas night movie! This year we're going to see, "The Day the Earth Stood Still!"
I'm going to try to write some more later, but, just in case I wanted to get on here and tell you all to have a very wonderful Christmas.
Thanks for reading.
much love

I can't believe that Christmas will be here in a week!!

Thursday, December 18, 2008
I'm almost finished with decorating, but I have done absolutely no Christmas shopping. There is actually a little method to my madness or perhaps madness to my method? We are having our 10th (I think, it could be 9th or 11th, we can't really remember) annual Christmas open house. We invite friends, neighbors, relatives, coworkers, people from church and anyone else we can think of! They can stop by to visit and get something to eat anytime between 9:00 a.m. and 6:00 p.m. Yes, you read that correctly...9-6...9 HOURS! I convinced Rod to shorten the party and he actually changed the time from 9-7, so we cut the party from 10 hours to 9 hours! We have breakfast items from 9-11:30, lunch items from 11:30-3:00 and dinner items from 3-5. Included in every mealtime are Rod's famous cinnamon rolls! He makes....are you ready for this???? 24 DOZEN!!! If the weather is nice we eat most of them because we usually have 200-225 people stop by! I know it's crazy, but it's really a lot of fun. I no longer do any of the cooking or any of the serving. We get some delicious food from a local restaurant (Wheatfields) and two wonderful young woman who have helped us with this party for the last three years will be coming again doing the setting up, serving, cleaning and even answering the door if I need help! So basically all I have to do is sit around and talk. And eat. It really is fun.

Here is our tree:

This is my "Peggy Karr Tree." I'm am a huge Peggy Karr freak. In fact, someone actually called me a "Peggy Karr Stalker!" If you are unfamiliar with Peggy Karr, you really should go to: http://www.peggykarrglass.com

In terms of Christmas presents, I'm not worrying about buying anything until after this party. Most of what I'm buying are going to be gift certificates, which is pretty easy. Plus, Rod, Nick, Chris and I have decided that we are not buying each other any gifts this year. We have more than we want or need. The only thing we're short on is time together. So, we decided to nix the gift-buying and just focus on spending time together. It's going to be a great Christmas.

Asa...AKA "Skinny-Minnie"...
AKA "Mr. Anxiety"

Haver...AKA "Fatty-Fatty-Bo-Batty"...
AKA "Mr. I'm So Happy That No One Thinks I'm A Bully Any More!"


Friday, December 12, 2008
I would like to lie and say that I've not been posting for a few days because there hasn't been much going on. But, between the dogs and the PH, I've just not wanted to whine.

OK, on the dog front. Things have escalated to the point that when they "fight" Asa has actually been bit hard enough that he bled. We tried and tried and tried to get in touch with our vet. She didn't call back. Rod always ended up having to talk to Carl, "the doggy behavior specialist." Carl was helpful with the initial issue of food aggression, but things had progressed to where his "helpful hints" weren't at all helpful. Finally (after I called the vet's office and threatened to take the dogs somewhere else and finding out that our vet never got the messages because Carl kept intercepting them) we were actually able to talk to our vet. She was very, very helpful. The bottom line is that Haver is NOT being a bully! Yahoo!! It appears that Asa has some kind of anxiety problem and is very afraid of Haver along with some other things. Instead of walking away or being "submissive" he picks a fight with Haver, raising his back hair, curling his tail over his back, growling and making all kinds of weird noises.
This is Asa getting "geared up" when he sees Haver:

Then, this happens:

Asa barks at all kinds of noises we don't hear and things we (including Haver) do not see. Haver has never been mean or aggressive to any people or any other dogs except for Deeoje. But, as our vet pointed out, Deeoje did come into "Haver's territory," a territory that was already tense because of Asa's anxiety. So, we will be changing a few things around here and will be communicating with the vet on a regular basis. She assured us that this is not typical behavior at all and that Asa might actually need some medication for his extreme anxiety.

Just so you don't think it's always havoc and bloodshed around here, here is Asa when Haver isn't around:

And this is how Haver (AKA "Fatboy") thinks he should be getting his meals!

So, things are improving somewhat in the "doggy department." Keep your fingers crossed. I have no problems with giving this crazy little dog drugs, if it's what he needs. After all, "drugs are MY friend!"

Speaking of drugs...
I've been having some chest pain (PH-related) and some muscle and head pain (Flolan side-effects related). Sometimes if I increase my Flolan dose I can get the chest pain to go away, but then the Flolan side-effects increase. I was maxed-out on the pain meds I was already taking, so, I went in to see my PH doctor on Tuesday. He did some tests and checked some records and ruled out that the chest pains were heart related. He decided to switch my pain meds. So, hopefully this will help keep the pain under control. I don't want you to think that this pain is unbearable, it's just draining. It also makes it hard to concentrate. So, I'm not getting squat done around here. I'm not even doing a lot of reading. So, hopefully this new pain medication will kick in and make a difference.

I've also been frustrated with the difficulty of getting out and about. The cold weather is tough (even though my PH doc said that cold weather does not make pulmonary hypertension worse...it just feels like it), making my lungs hurt and tiring me out. But, it's also difficult with the extra weight of the layers of clothes I wear to help keep me warm, the heavier coat and then dragging the oxygen concentrator around. If I go out for one of these parties, or, like on Monday night it was two parties, then I have to bring along extra batteries so I'll have enough power to keep the concentrator working all night. That machine becomes quite heavy. Then if there are any steps, even a few, it becomes very difficult very quickly. I've gotten to the point where I'd really just like to stay home, all of the time. That's just not a very healthy attitude and I need to work through it. Maybe the new pain meds will help. Also, when we get the "boys" settled back down, that extra stress will be gone and that should also help.

So, that's about it. We won't be going to a movie tonight because we have a Med Center holiday party. We have another one tomorrow night. So no movie reviews this weekend. Sorry.

Thanks for letting me "get it all out" and thanks for reading.


I've forgotten to share good news about Mason!

Wednesday, December 10, 2008
He's out of the hospital. Here's a copy of what he posted recently on the PHA website. I need to thank you all and make sure you all realize how powerful your prayers are!
Hi all,

Im finally back home. What a experince it was. A brief review of it what happened while i was there was, respiratory failure, kidney failure, internal bleeding, c-diff. I spent 10 days on the vent and about 15 in icu. I think about 21 or 22 days altogether. I Have never been so weak after waking up from the vent. I couldnt even move myself in bed about a 10 days ago and now can stand on my own and walk a few feet. Alot of work to go but making progress. Thank you all for your support. I will post more when im a little more alert. I still get dizzy and tired fast.

Thanks for reading.

An interesting story....

Friday, December 5, 2008
Last week I stopped into Panera's to buy some bagels to have around the house when Chris was home for Thanksgiving. I was standing at the counter, drooling over the variety of bagels, cookies, etc., drool., etc., drool., etc. I didn't really pay attention to any of the customers, and was surprised when this gentleman came up to me and said, "Well hello honey! How are you doing? Can I have a hug?" He had a young boy (about 12 years old) with him and both he and the boy looked incredibly familiar. Having a certified "PH brain," I assumed that I knew the guy and just couldn't remember exactly who he was and where I knew him from. I was thinking he was one of the docs from the med center and that most likely they had both been to our annual Christmas open house. Then he asked me why I had oxygen. OK, now I'm starting to wonder who this guy is that he doesn't know what's wrong with me. Maybe I taught his son or one of his other children. So, I told him all about PH, doing my normal "let me teach you all about pulmonary hypertension" speech. All of a sudden he said, "You know, I hope you don't mind that I gave you a hug. I know WE DON"T KNOW EACH OTHER, but you looked like you needed a hug!" Holy crap!! Here I've been all nice and cozy to a COMPLETE STRANGER!! Then he told me he was an author and that he wrote a book called, "Prayer Poems to Live By" and would I like him to mail me a copy? He asked me if I "had a card" with my address which of course I didn't but I did rip off a piece of paper and wrote down my address. (In retrospect, that was probably really stupid, but I was still trying to wrap my hear around the fact that I thought I knew this guy and I didn't, I gave this stranger a hug and he wanted to give me a gift!)
Thanksgiving came and went and this week I received a package in the mail. It was the book from this "stranger." It is a self-published book filled with very nice prayers in the form of poems. I looked at his name and his picture (that was on the back of the book) and still couldn't get past that feeling of somehow knowing this guy. So, being a techno-wonder, I decided to "Google" the guy. Well, I figured out how I knew the guy...he had been prominently in the news a couple of years ago. Here's the headline:

"Former Strip Club Owner Denied Liquor License"

I knew the guy and his son from the news. He wanted to open a new restaurant and was going to name it after his son. Because of his former business the neighborhood thought he would open a similar type of establishment. From the poems and the comments in his book, it's obvious that this man has been through wringer with everything.

So, it's not everyday that I've been hugged by a "former strip club owner" turned prayer poem author.

Only in America.

Thanks for reading.

What does a woman with pulmonary hypertension do when the temperature is 24 degrees on December 3nd and it feels like 9 degrees?

Wednesday, December 3, 2008
1. sleep late
2. have breakfast
sit on the couch with a warm blanket and watch TV....all day.

Thanks for reading.

What does a woman with pulmonary hypertension do when the temperature is 52 degrees on December 2nd and the high is normally 25.1 degrees?

Tuesday, December 2, 2008
1. eat breakfast
2. stare at the TV, watching Rachel Ray when I don't even cook
3. pack my backup Flolan "stuff"
4. get extra Inogen oxygen concentrator batteries
5. load #3 and #4 and two bags of glass iced tea bottles for recycling in the car
6. go to the bank
7. get a hair cut (I no longer look like a homeless woman...a homeless woman with bad hair....ok, maybe just a lady with bad hair)
8. have a quick lunch with two friends
9. stop at Kohls to find some jeans that don't gap in the back showing off my underwear when I bend over
10. leave Kolhls empty handed with my underwear showing as I bend over to put my oxygen back in the car
11. go to Dillards to look for jeans that don't gap in the back showing off my underwear
12. leave Dillard with two pair of sweat outfits...with elastic
13. stop at Taco Bell for a much wanted and not needed Diet Pepsi and cinnamon twists
14. drop glass off at the recycle place
15. stop at grocery store to buy a few groceries and enough stuff to make some simple dinners for a few days for when the weather goes back to ridiculous "normal" cold
16. drive by the DSW shoe store twice, looking for a close parking spot
17. drop something off at a friend's house
18. come home and try to hurry up and post this while I still have energy
19. take lots of extra pain meds and put up my feet and watch TV
20. go to bed early.....sleep....sleep....sleep
I thought I'd share a picture of my oldest son, Nick, playing with Deooge on Thanksgiving.

Thanks for reading.

So, Annette, what have you been doing for 11 days?

Monday, December 1, 2008
I was really surprised to see how long it has been since I dropped in to post "what's happening" in Omaha! I have LOTS of excuses! So, are you ready?

1. Well, I was having some PH related problems for a few days. So, I increased my Flolan which helped with the PH related problems, but increased the side effects. But, that all leveled off and I'm doing much better....except that I went out to run a couple of quick errands today and it was so stinking cold and windy that I had to come home and take some extra Darvon and increase the pump for a while....no bible study for me tonight...unless I can figure out how to go and keep my lungs at home...I'll have to work on solving that little problem....

2. We've been having some serious DOG problems! Haver and Asa have continued their "pissing" contest (figuratively, not literally) about who is the alpha dog. They've finally figured out that I'M the alpha dog (no comments about what that makes me...you know, a b*&%@, because believe you me, I have lived up to that title with their behavior!). I've talked to the vet, the behaviorist, and lots of people with experience and NOTHING HAS WORKED! So, we've finally decided to stay out of it and let them work it out. They seem to actually be doing better! They have no problem outside and they are now starting to stay in different rooms when they are inside. Sounds like a plan to me!

3. I needed to get thank-you's written to all of the fabulous people who donated money to our 3rd Annual Phenomenal Hope for a Cure fundraiser and who were not able to come to the event. There were over 50 kind people who I wrote to.

4. I needed to finish reading my book club book because we are meeting this week to discuss it. This month we read "Three Cups of Tea, One Man's Mission to Promote Peace...One School at a Time" by Greg Mortenson and David Oliver Relin.

What an incredible, incredible book! It's kind of a long one and there's lots of names that are hard to pronounce, but it's really worth the time (plus, you can just do what I do when I come to a name like Syed Abbas or Twaha or Saidullah Baig or, my personal favorite...Mohammad Ali Changazi....I just substituted "Bob" for their name). The book will give you hope and help you realize that one person can make a difference in the life of a child, or, in Greg Mortenson's case, how one person can make a difference in the lives of thousands of children!

5. Rod had a colonoscopy on Wednesday. Yes, I asked him if he was OK with me mentioning this piece of information in my blog. He said, "Sure, everyone should have one when they turn 50, just remind everyone of that!" So, you have been reminded, although he's 52...oh well, better late than never! Anyway, he did just fine and everything is normal. But, I had to be the "adult" because he was all doped up for the rest of the afternoon and early evening.

6. Chris flew home with his dog, Deeoge on Wednesday night. Rod was back to his "normal" self by the time Chris' flight came in, around 9:30 pm, so he drove us out to the airport to get both of the "guys!"

He's such a smart alec! He refused to give me a "normal" smile! Of course, when you read number 8, you'll see there was probably a reason for him not to smile...
Do you see my oxygen concentrator behind him? It's kind of like "Where's Waldo!)

7. Please reread number 2 and add one more dog into the mix...now close your eyes and imagine what might have happened....no...add more growling....add a little bit of blood...OK, now you've got it! It's times like that, that I wished I drank.

8. Chris woke up Saturday morning and said, "I'm ridiculously sick!" He had an infected tooth that caused his tonsils to swell up so much that they were touching! He was miserable! Between Rod, Nick, a doctor friend of Nick and our wonderful, wonderful dentist who came into the office on a Saturday afternoon, we got Chris all of the meds and attention he needed. He's starting to feel better, but he was absolutely miserable! It was very hard to put him and Deeoge back on that plane to Chicago on Sunday.

Well, I think that's about it. I have some pictures and a couple of cute little stories to share, but I'll do that later. If you are still reading, you are a very kind friend, or, you need to get a hobby! This was a very long post! Sorry!

Thanks for reading.

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!


Saturday night and I have not much to say!!

Saturday, October 25, 2008
I just thought I'd stop by and say hello. I LOVED the movie "Eagle Eye." It was so suspenseful! I would highly recommend seeing it.
I've been working all day on these little booklets we're going to have for each person attending the fundraiser. It is going to be filled with stories of people with PH. I've got 24 different stories. I have young women, older women (like myself), a couple of kids and a couple of guys! It's been really interesting reading these stories of these amazing people. It's also been a bit tricky editing the stories so I could get them to fit on a piece of 3 1/2 X 5 inch piece of paper! I also have a picture to go with each story.

Our numbers are looking a bit better. But, I've decided it really doesn't matter. I'm going to be happy with whatever we get.

There was a little write-up in last nights paper:


Fundraiser set for lung disease

Nebraska first lady Sally Ganem will serve as honorary chairwoman at the third annual Phenomenal Hope for a Cure fundraiser, Nov. 1 at DC Centre West, 11830 Stonegate Drive.

The 10 a.m. event aims to raise awareness of — and funds for fighting — the sometimes fatal lung disease pulmonary hypertension.

A silent auction will kick off the event. A brunch and a program will begin at 11 a.m.

Col. Carl Hicks, chairman of the Pulmonary Hypertension Association's board of trustees and vice president of advocacy for the association, will speak at the event.

Pulmonary hypertension is a complex health problem of the lungs that causes continuous high blood pressure in the pulmonary artery in the lungs. That results in an enlarged heart.

Tickets are $30. For more information, call Kathie Starkweather at 617-7946.

Ok, that's enough computer time for one day! I think my eyeballs are going to jump out of my head if I don't give them a rest!

Sorry, that was really kind of gross!

Thanks for reading.

I've been a busy non-blogger!

Friday, October 24, 2008
I cannot believe that our PH fundraiser is a week from tomorrow! ARG!! I've been trying to get the few things done that I have to do. Have you ever had things that you had to get done. But, for some reason, you end up spinning your wheels so much you end up not getting anything accomplished?

I'm also worried because we are so far behind where we were last year in terms of numbers and donations. I'm trying really, really hard to live what I've learned and what I've preached: "Let go and let God." We already have so many things to celebrate with this year's event! We have had more phriends donate items for the auctions than we have ever had before! We have an awesome speaker coming, Col Carl Hicks! I've got over 20 fabulous stories and pictures of various phriends (friends with PH) that we will put in little booklets to give to attendees!

So, I'm going to go get some work done before Rod and I have our date night. I think we're going to go see "Eagle Eye."

Hopefully it will be a good movie. But, more importantly, hopefully the popcorn will be delicious!!

Take care.
Thanks for reading.


I'm having one of those days...

Wednesday, October 22, 2008
You know, one of those "I feel kind of unsettled and really tired for no good reason" days? Right now I'm feeling the need for comfort food. So, while some leftover pizza is heating up in the oven, I'm eating Edy's chocolate chip ice cream straight out of the container, telling myself I'll only eat while the pizza warms up and that I'll put the spoon and the ice cream away as soon as the buzzer goes off. Wow...the oven is really slow...I'm impressed with how much ice cream I can move from carton to mouth with one small spoon....
pizza's done....

I've got my husband home!!

Sunday, October 19, 2008
There are lots of smiles and wagging tails at our house!

Thanks for checking in.

Getting Wacky!!

Saturday, October 18, 2008
Our 3rd Annual Phenomenal Hope for a Cure fundraiser in only FOURTEEN DAYS AWAY and our response for purchasing tickets is way, way behind the last two years! I'm thinking that between the election and the economy people are a little preoccupied and might have forgotten to send in their reservations.

I'm also worried that because of the economy that maybe people can't afford to come. But, it's only $30.00. But, that is 9-10 gallons of gas. I did get in touch with a local newspaper reporter who was our emcee the first year. He is an excellent writer and has been very supportive. He agreed to do an article and get it in the paper this coming week. I've sent an email to a reporter to one of the TV stations. A friend of ours who runs the public affairs office at the hospital where my husband works is in China with Rod. I sent him an email asking for advice. He was kind enough to send me a list of contact people in the media and told me to tell them that I'm a friend of his. Hopefully that will help. What a great guy! It's not his problem and here I am bugging him half-way around the world!

Hopefully, getting a little press coverage will help remind people to send in their reservations. ARG!! I'm almost wishing I hadn't asked Col. Hicks to be our special guest speaker. He's the chairman of the Pulmonary Hypertension Association board and is vice president of advocacy for PHA. It's going to be very embarrassing having him come all the way from the east coast and have 50 people in the audience! ARG!!!!!

OK, if I was really a good Christian, I would sit and pray and remember that some things are out of my control. I would relax and realize that it is, what it is and enjoy whatever happens. I also think a Blizzard is called for.

I'm off to Dairy Queen.

Thanks for reading.


OH, keep your fingers crossed....Rod might come home two days early from China, which means he might get home late tomorrow night!!


Thursday, October 16, 2008
1.My phriend Mason is doing better! He's in a regular room and might even be able to get out of the hospital on Monday!! Thank you so much for all of your prayers.

2. Rod is still in China. I would like to share his latest email with you:
"Just checking in to say hello. Just had lunch: duck breast and intestines
with rice and salad. I ate the rice. I do not believe that my friends
recognized the intestines. Good and bad to be a pathologist!! Love-r"

Thanks for reading.


Not much going on...

Tuesday, October 14, 2008
Thanks to all who are praying for my dear phriend, Mason. The last I heard, the doctors had drained some fluid off of the area around his heart. The doctors are still trying determine how much of his problems are due to rejection or other things.

Otherwise, things are very quiet around here. I don't know if I mentioned that Rod is out of town. He went to China with a bunch of people from the med center. I'm not sure what all he's doing. I know that he's giving some symposiums, talking to some physicians, just the typical stuff.

I've been keeping busy knitting and becoming one with the couch. It's been raining for a good couple of days here which doesn't help much with trying to keep busy. I did take myself to a movie yesterday afternoon. I went to the "Dollar Theater" (which is now the $3.00 theater) and saw the movie "Swing Vote."

It was a very entertaining show. There was a very sad part though, that had nothing to do with the movie. I was waiting in line to get my ticket and a young man (late teens, early 20's) was in front of me. He was a rather large boy and was saying to the ticket girl, "This is really embarrassing, but can I get a refund? The arms don't move on your seats and I don't fit."
How incredibly sad...

The dogs are, of course, driving me nuts! While I was in the hospital, Rod decided it would the ok for them to sleep in our room. It was fine except that there was no room for me in the bed. Plus, Asa would get all freaked out about something and would start barking in the middle of the night. So, the third night home from the hospital, I decided they needed to go back into the laundry room. Usually Rod takes the dogs out for their nightly "constitutional" and then puts them to bed. Now I'm starting to understand why Rod wanted to let them sleep in our room! The first night that Rod was gone, I took them outside to do their duty. I knew Asa was going to be nervous, so I decided to "trick" him and go out and come back in a different door instead of the laundry room door. Well, it worked great until I tried to get him off the floor to go into the laundry room. I had to get out the training/choke collar and drag his butt into the room. As soon as I let him go, Haver growled and jumped at him!! I yelled at Haver, shut the door and waited outside the laundry room. Every time Haver growled, I yelled at him through the door. After about 5 minutes things quieted down and I went to bed. There were no problems the rest of the night. Last night I did the same thing only when I drug Asa in the laundry room by the training collar, Haver growled, jumped and Asa ran out of the room. Then I picked up Asa's two front legs and "danced" him into the laundry room. Same thing happened. Haver growled, jumped and Asa ran. I made the executive decision that if Haver was going to be a creep, he could sleep in the garage! So, feeling all tough, I put his bed, his bone and his fat butt into the garage and shut the door.(By the way, it's attached to the house and the door to the garage is the laundry room door.) Then I went to get Asa. I assumed it would be at least a little easier to get him into the laundry room since he was going to have the whole room to himself. HA!! No such luck!! He rolled over on his back and put his feet in the air, looking at me like "Aren't I cute? You're not going to make me sleep in there, are you?" Well, yes I would! I ended up grabbing his front legs and dragging him across the kitchen floor on his back! He slid pretty well, actually. It helps that the floor is hardwood. Anyway, I had a very quiet night and when I came down in the morning to let them out, they were kissing each other and wagging their tails like they hadn't seen each other for years!

I'm trying to find a dog whisperer. If you know an available one, let me know. I'm willing to pay BIG BUCKS!!

17 days until our 3rd Annual Phenomenal Hope for a Cure!!

Thanks for reading.


Prayers please for a phriend...

Sunday, October 12, 2008
Mason just celebrated his 20th birthday. He had a double lung transplant in 2006 and has been dealing with some serious chronic rejection issues. He just entered the hospital again in California and really needs prayers to get through this. He's just a kid and has been dealing with this for too long. He had a transplant to give him a second shot at a wonderful and "normal" life and it hasn't happened yet.
I know there are lots of people all of us pray for on a daily basis, but I need to ask that you please include Mason.

Thanks for reading

Well, this is a new one!

Friday, October 10, 2008
I just came back from the doctor's office. My lungs sound nice and clear. I just need to keep up with the antibiotics and the anti-yeast infection drugs (my mouth...yuck!!). I told her that I've been able to reach my "goal" on the little breather thingy I got in the hospital. I need to have an x-ray during the beginning of November to see if my lungs have completely cleared.

So, as I was getting ready to go, the doctor took my hand and said, "You remind me of one of those little toys that you push down in the water and they keep popping right back up." I think that's a compliment!

Yesterday, I had basically the exact opposite comment. I went in for a follow-up mammogram for some suspicious spots the doctor detected 6 months ago. By the way, they look the same, so I just need to go back in another 6 months. Anyway, I had the same tech do the "squeeze machine" from 6 months ago. She said, "Now, you have...pulmonary fib...?" I said, "No, I have pulmonary hypertension." She said, (are you sitting down for this one?) " I just hate those slow, painful...." She didn't actually finish the sentence, but I'm pretty sure she was going to say "deaths." I think I like being a bobbing water toy.

Thanks for reading.


Oh, by the way, did I ever show you what Haver did to the laundry room wall?

The dog has issues, lots of issues.

Recovering and being very, very lazy!

Thursday, October 9, 2008
Obviously, I'm not the only one!


This guy is really getting into it!

Ever since I've gotten home from the hospital, all Asa and Haver seem to want to do is sleep, sleep, sleep, sleep, sleep! EXCEPT that they can't seem to sleep through the night. I think it's like when Nick and Chris were babies and got their days and nights mixed up. Normally it wouldn't be a big deal if they woke up during the night, since they NORMALLY slept in the laundry room at night. But, while I was in the hospital, Rod decided to let Asa and Haver sleep in our room at night.

Last night, something woke them up at 1:30 and they're yipping and yapping, so Rod took them downstairs and put them outside. I was feeling guilty about them being outside all night when it was kind of chilly and so when I woke up around 5:00 a.m. I asked Rod if we should let them in. He did. I don't know why that guy listens to me! We've been married for over 30 years! He should know better! So, he goes down and lets them in, they run up the stairs, jump on our bed and lay down, right in the middle! Asa is first, head to the headboard. Then Haver lays his head on Asa's rear end and, because he's HUGE, his feet stretch to the footboard! We only have a queen size bed! Rod was able to lay on his side and get back to sleep. I was laying on my back and my arm and leg kept sliding off the bed! I was impressed that I actually fell asleep for a while. The alarm goes off around 6:00 am and the only thing that happens is Asa moves up and around Rod's head so it looks like Rod has a giant fur hat! That did give me an opening to push "Mr. Big Boy" over a bit and we all slept nicely until 7:30! Of course, Rod was really late to work, but at least he got caught up a bit on missed sleep!

Oh, it's never a dull moment in the Markin household.

Thanks for reading.

Sorry that I've been MIA....

Tuesday, October 7, 2008
I just got out of the hospital. I came down with pneumonia, in both lungs. I'm doing better but, it's slow going.

Rod and I went to Rhode Island over the weekend of the 28th. We went to witness the marriage of Chris' best friend since first grade! Jason and his family are such an amazing bunch of people. His mom, Paula, is a very, very good friend who has the biggest heart I have ever seen! Chris was the best man so seeing him over the weekend was a big bonus.

Anyway, while we were out there, I started getting a sore throat. I really didn't start to feel "crumby" until Monday morning. I still thought that I was maybe getting strep throat. Then, on Tuesday, I started getting really, really tired. I was falling asleep sitting up, etc. Still, I figured it was a bad cold or strep. Rod got me an antibiotic and I figured I'd be feeling better very quickly. Wednesday came, and that's when the trouble started. The exhaustion was getting worse and I was starting to have trouble breathing. I was unable to keep my oxygen levels up, even with my concentrator set on the highest setting. I was really kind of "out of it." I called Rod (more accurately, he called me...he does, every day 4-5 times a day....I sure do love that guy)and told him how much trouble I was having. He ended up coming home early to take me to the doctor. I had an x-ray that showed pneumonia in both lungs. So, we headed on down to the hospital.

I was discharged on Sunday afternoon. I'm on antibiotics for another week and should be back to "subnormal" within no time.

OK, that's it for now. I just wanted to let you know what's been happening.

Thanks for reading.


Not much going on...

Thursday, September 25, 2008
It's been nice and quiet the last couple of days, except for me screwing up the puppy pecking order again! Haver is getting rather...well...FAT! And, Asa is looking quite thin next to him (although I'm betting that Asa is "normal" it's just that compared to Haver, he looks like he's starving). So, I decided to put Asa's food dish out in the kitchen where he could get to it more easily and wouldn't be "cornered" in the laundry room with Haver. Well, that worked really great for ONE DAY! Then, Haver started bullying Asa again, growling, staring, marching by slowly with his tail up and curved! What did I do? Well, of course, I felt bad for Asa, so I put Haver in the laundry room with his food and shut the door. Asa ate and was very happy. I opened the door when he was finished and Haver hadn't eaten a bite of his food, but he ran right to Asa's bowl and started his growling, staring, etc behavior. So now, for the last two days the two of them having been having little pissy puppy pecking order brawls! They were awake for quit a bit of last night, growling and barking at each other in their room (the laundry room)! And, today it's been more of the same. So, I decided to go back to putting both of their dishes in the laundry room and see if they can work it out. I realized that if Asa was able to jump up on a giant hay bale that he wasn't exactly starving!

It has been very quiet this afternoon. So, either #1. my putting their food back in the laundry room is working, or #2. they are just so stinking tired from fighting all night that they both needed some sleep! (I'm hoping for #1, but am a little worried that it might actually be #2!)

Skinny Asa:

See how scrawny he is? He looks so sad!

Haver is checking out his "lovely athletic body"in the mirror.

How can this sweet face turn into a bully?

I'm sorry...I'll try to be better....

Just don't take away my FOOD!!

Thanks for reading.