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

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.
Annette

Excellent news on our phriend Mason!!

"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.

Annette

PH Awareness Blogging Day!

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.

http://www.phassociation.org/awareness/Awareness_Month/PHBloggingDay08LIST.asp

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.
Annette

Sunday night...just checking in.

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.
Annette

Prayers please for a phriend...

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.

Annette

Hello, hello, hello, hello...

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.
Annette

Movie and a Book Review Time!

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.
Annette

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.
Annette