Wackyville!

Well, Rod and I have decided to once again, "Carpe Diem!" and use this period of my feeling so well, to take another trip. We have pretty much decided that as long as I'm feeling well, we're going to take the trips that we planned on taking during our retirement years. So, on Friday we are flying to Barcelona, Spain to get on a Mediterranean cruise! We will be going to Italy, France, Greece and even Croatia! We're even going to "meet" a woman I've spoken online with who also has PH and who is also on Flolan! (the medicine I get through the central line) She lives about an hour away from Barcelona! So, on Sunday, Rod and I are going to have brunch with Marta and her boyfriend before we get on the boat! Crazy wonderful, isn't it?
Also adding to "Wackyville" is the fact that we are only about 6 weeks away from our 2nd annual Phenomenal Hope for a Cure fundraiser! I'm trying to get things taken care of before I leave that should be taken care of by the time we get back from our trip! But, I have found out that we will have internet access while we're on the ship, so I know I can work on some things if I need to.
Since we will have internet access, I'm hoping I'll be able to update my blog with trip activities and maybe even some photos! In the meantime, maybe this picture will keep you all smiling.
Thanks for reading.

Annette

A Wonderful Weekend in the Windy City!

There is nothing better than spending time with your family! We had such a great weekend! We went out to dinner a couple of times, we went out to breakfast a couple of times and we sat around watching Seinfeld DVD's while eating chips. Our family has always been good at eating! :)

In between eating we visited the Art Institue of Chicago where we were able to see such classic pieces of art as Grant Wood's "American Gothic."
Did you know that Wood's sister was the female in the picture and his dentist was the man? He thought they stood for an average American father and daughter. He included plants in the painting behind the girl to symbolize her feminity.

We also saw some of Frederic Remington's beautiful sculptures.

We even saw some of Monet's works!

Now, before some of you start worrying that the Markins have become a bunch of high-class snobs, visiting high-brow museums, you need to also know that after the museum the four of us went to the Navy Pier and saw the movie "The Transformers" on the giant IMAX screen!

It was a fabulous weekend and I felt really good the entire time!

Thanks for reading!

Annette

Have you ever noticed how difficult it is to.....

make a decision, any kind of decision when you're tired? I have noticed over the last week or so that I can't make a decision to save my hide! I can't decide what to wear, when to go to bed, what to read, if I should read or get on the computer and on and on and on! I've been trying to decide what to write for an update on this blog. I couldn't decide if I should just write what's going on or if I should write what will be going on or if I should write about what I wish was going on. So, in the meantime, my way of dealing with the frustration of not being able to make a decision is to sit in front of the tv and eat. I've gained 7 pounds over the last couple of weeks of indecisiveness!

Other than being frozen by the attempt at making decisions, Rod, Nick and I are going to Chicago this weekend to visit Chris. So, when you see no entry for a couple of days, know that I'm fine, just off having fun.

OK, I think I've now made a decision! I'm going to bed!!!

Thanks for reading!

annette

It's nights like this that make me glad I'm not working...

I have had problems with insomnia since I was diagnosed with PH. Usually a "cocktail" of a couple of sleep aides plus taking some of my regular meds at night instead of the morning (sleepiness is considered a side effect) usually does the trick. But, every once in a while for no apparent reason I have a night like tonight. I've just taken my 2nd benedryl hoping that will put me over the edge and into nighty-night time. It's now 12:30 a.m. and the tv choices are getting pretty bleak. Anyway, thank you God for making it so I don't have to go anywhere tomorrow, especially in the front of a room full of first graders! Yet another perk of being sick! I can pull an all-nighter and not have to "pay for it" in the morning.

Thanks for reading.
Annette
Z-Z-Z-Z-Z-Z-Z-Z-Z-Z-Z-z-z-z-z-z------

Sunday night ponderings......

It was a nice, quiet day. We went to church, stayed and visited for coffee and donuts and then went to have brunch with Nick at Village Inn. Then Nick came over to go through some of his old boxes of "treasures" that had been collecting dust in his old room. Rod worked on a couple of projects around the house and I worked on some stuff for the PH fundraiser. I took an afternoon nap while Rod walked around Zorinsky (do I know how to exercise or do I know how to exercise!!) followed up by a trip to Sonic (Rod, Charlie and I...no ice cream for Charlie...he's got enough smell problems!!) and then back home for a little reading, tv watching and just plain lazy time! Chris called on his way home from working at the Bears football game, sounding tired. I was glad to hear that he was going to have some of his own "down time" when he got home. He's got to get up early to go to work! :)
All in all it was a fabulous Sunday.

Thanks for reading.
Annette


Nebraska football fans!


A picture of Chris and I when he was home a couple of weeks ago. We were heading to a wedding.

Just a quick one!

I wanted to just drop a quick note to thank all of you for your prayers, kind words and support with the passing of my phriend Eileen. I know that God never promised us a life free of problems. But, He did promise to stand with us as we face these problems. I feel His presence so strongly when I have all of you helping me to stay strong. Thank you.

Speaking of strong, our beloved Huskers are going to need something stronger than corn to win this game against USC tonight! We're having some friends over for dinner and to watch the game. Let's just hope that we can walk away with very few injuries and a little bit of our dignity! I am such a supportive fair-weather fan!!

GO BIG RED!!

Thanks for reading.
Annette

We've GOT to find a cure!!

I'm well aware of the seriousness of this disease, pulmonary hypertension. I'm well aware of the symptoms, treatments, side effects, etc. I'm also well aware of the survival rate of 2-5 years after diagnosis. But all of that just seems like information for someone else to worry about. I try not to focus too much on the details. I try to just live life....take it as it comes and thoroughly enjoy it! But, once in awhile something come along and reality comes right up and smacks you in the face.
I had been thinking about a new member of our local PH (pulmonary hypertension) support group. In fact, our support group leader had just asked me a couple of days ago if I had heard from Eileen. I realized today that I hadn't talked to her since the beginning of the summer. She lived in Iowa and we would chat on the phone from time to time and send each other e-mails. The last time I had spoken to her, was the end of June. She had just been turned down for transplant at one of the transplant centers but was heading up to the Mayo Clinic for evaluation for transplant. She was very positive and was looking forward to the summer with her wonderful husband and three teenagers.
I found out today that she passed away on July 22nd, the day after her daughter's 17th birthday. When she and her husband arrived at the Mayo Clinic on July 19th. She was having lots of problems with fluid retention. A procedure to remove some of the fluid from around her heart started a cascade of problems that she was not able to recover from.
Some of you may be aware of the fundraiser we are working on for pulmonary hypertension. It is going to be on the evening of November 17th. We are trying to raise awareness of PH and to raise money for research for a cure. We had our first fundraiser last year and were pretty successful. If you are not on the mailing list (you would know because you received a "Save the Date" magnet in the mail about a month ago) and would like to attend, please send me an e-mail (annettemarkin@hotmail.com). We have to find a cure! I would like to share part of a "Caring Bridge" journal entry that Eileen wrote on July 2, 2007:
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My health seems to be taking a downward turn and I thought this site would be a great place to keep those of you who want to know in the know... I had been having problems with increased shortness of breath and low oxygen levels. Tests done at Mayo's indicated that my condition was worsening and my doctor suggested that I meet with the lung transplant team. I spent the following week being poked, prodded, scanned etc. Jim and I met with a Pulmonologist, Infectious Disease specialist, Psychiatrist (she thought I was an optimistic, humorous and resilient person - they are so easy to fool), transplant surgeon and the head of the transplant pulmonology department. We got a thumbs up from the first several people we met, but the last two doctors were not as positive. In fact, the last pulmonologist told me I was not a transplant candidate. HOWEVER, the team meets as a group on Mondays and everyone presents, argues etc. and then they vote...Get the rosary beads out.....

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Thank you all for reading. Please pray for Eileen's husband and children as they continue to work through their grief. Please, please continue to pray for a cure.

Annette

Chick Flick Alert!!

Yesterday, Rod had a dinner meeting. Now, some might think, "Oh, boo-hoo! Poor me! Rod's off to some dinner meeting and I have to sit home all alone!" Well, not me!!! Whenever Rod has a dinner meeting I think "Woo-Hoo!! It's CHICK FLICK NIGHT!!" I find the chickiest chick flick playing at the movie theater and go buy a buttered popcorn and DIET Coke and thoroughly enjoy myself! Nothing is better than sitting in a movie theater, watching some goofy movie and not having to share my popcorn with anyone!!
So, last night I went to see "The Nanny Diaries!" I absolutely loved it! It was cute, funny and thoroughly entertaining! I would highly recommend it! There were only 4 other people in the movie theater and three of those were these ladies who were all probably in their 70's. Two of them were a bit hard of hearing and so the third one would have to repeat most of the dialogue! It was hilarious! Actually, sometimes it was a bit helpful, especially when I was so busy shoving the buttered popcorn down my throat and I would miss something. I'm so use to watching TV with the Tivo attached to it and rewinding the show when I miss something. I was thrilled to have my own two-legged Tivo...sitting right behind me! ARG!!
OK, that's it for excitement! Thanks for reading!

Annette

Good News, Bad News, Good News, Bad News....

So, the good news is that I feel pretty good today. The bad news is that I feel good because I had to increase my Flolan. The good news is that I CAN increase my Flolan and feel better. The bad news is that this is a sign of the continued progression of the disease.
Over the last 5-7 days I have noticed an increase in heart palpitations and an increase in tiredness, especially when I would be up and moving. At first I figured I was still recovering from the "lovely" gallbladder surgery. But, last night I talked to Rod about it and we decided it would be a good "test" to increase the Flolan a little bit and see if I felt better. I changed my pump setting from a 79 to an 81 and within an hour I felt significantly better! I even slept better. The night before I had been up several times. I was just uncomfortable, with my breathing and some heart "blips." I woke up this morning also feeling better than I had for a few days. But, just to be sure, I bumped the pump down to 80 for a while this afternoon to see how I reacted. Sure enough, within an hour I started feeling crummy again. So, as Rod says, even though it's not a good sign, it is so much better to be able to feel better.
But, there is some REALLY GOOD NEWS today! My "baby" Chris is 24 years old today!! It is amazing that he is 24 and his beautiful mother is only 26! What a miracle!! Unfortunately he's in Chicago and I can't give him a real hug. But, he is having dinner with friends of our and they've promised to give him a real big bear hug for me!!
Thanks for reading.

Annette

Guilty Pleasures!

One of the HUGE positive things about being sick, is the luxury of having time to indulge guilty pleasures! Here's an example of my "guilty pleasures" so far, just today:
1. Driving to McDonalds and get a sausage biscuit for breakfast!
2. Watching Rachael Ray (I don't even cook, and I have no burning desire to start now!)
3. Watching how Whoopi Goldberg does as a new co-host on the View.
4. Running errands (like getting a new safety deposit box) during real business hours.
5. Going to Panera for lunch and stay a little longer to read a couple of chapters in my new Kathy Reichs' novel!
6. Being able to read whenever I want!
7. Knitting lots of scarves for Together, Inc.
8. Watching All My Children and fast-forwarding through the commercials since I Tivo'd it!
9. Reading all of the blogs of all of my friends and my phriends.
10. Watching Charlie be a goofy dog. (see picture)



Thanks for reading.
Annette

A "PHull" Day....

In the Pulmonary Hypertension community we usually shorten "Pulmonary Hypertension" to "PH" to make things easier. We also like to identify each other as "phriends" instead of "friends" and sometimes "phamily" instead of "family." So, in the title of this particular blog, "phull" is actually "full." But, the point of writing "phull" instead of "full" is to point out that yesterday had a couple of "PH" experiences and/or coincidences and/or guidance from God.
We have FINALLY entered the last stage of our house project!! Yesterday the wood floor guy showed up. I was showing him around while having on my oxygen (like a good little girl!) and he asked what was wrong with me. I started up my normal response of, "Well, I have a rare lung disease." He asked what it was called and I told him "Pulmonary Hypertension." Well, he got this horrific look on his face and told me that his dad died of PH in 2001! Well, I've had people misinterpret "Pulmonary Hypertension" as regular systemic hypertension (high blood pressure) before so I went on to say that "Well, things have changed quite a bit in the last 6 years. I'm actually on a great medicine called 'Flolan.'" Flolan, for any of you that don't know is the IV medicine I get through a central line with the help of a pump that I wear around my waist. I have it on 24/7. It does not cure the disease but it does help significantly with the ph symptoms. So, anyway, when I mentioned Flolan, he said, "Yah, my dad was on Flolan too." Well, that completely blew me away! So, his dad DID have PH! And here was this kid whose dad died of a rare lung disease, working on the floors of a woman with the same rare lung disease! We visited a bit longer and he looked so very sad. I asked him if he was ok to work here. That I felt so bad for him. That it might be really hard for him to come to this job and see this daily reminder of what his dad and his family had to go through. He told me, "Oh, don't worry about me! I'm worried about you!"
So, I posted this encounter on the PHA discussion boards telling phriends that I felt like "dog meat" because this poor kid kept looking at me with this sad, sad face. As is typical with the group of phriends, they put things in perspective for me and reminded me that this was probably no coincidence that out of all of the homes in Omaha, this guy ends up working at our home. They felt strongly that this was the work of our Lord. They also suggested I talk to him about our "Phenomenal Hope for a Cure" fundraiser we are having this November 17th and see if he and/or his mom might like to attend. They also explained that he might have also been put on this job so that he could have an opportunity to do some healing. Maybe helping me out will help him feel like he's doing something for his dad.
So today when he came, he sat down and asked me how I was feeling. I told him I was doing great and then told him a bit about our fundraiser and asked if he thought he might be interested in going. He was thrilled He also said he knew his mom would like to go to! When he's finished with the job (which will hopefully be Monday or Tuesday....have I told you lately how tired I am of this project????) I'm going to give him a PH awareness band for both he and his mom.
So, now here comes an even stranger twist...his dad used to work in the lab with Rod (my husband) at the Med Center!! When I called Rod and asked him if he knew this guy, he was all excited and told me what a great guy he had been, etc., etc., etc. When I asked Rod if he knew that that guy died of PH, he said, 'Yes, I was aware of that." That statement with his voice and look reminded me that my dear sweet husband knows way too much about this horrible disease. It breaks my heart that he has to live with that knowledge.....
Anyway, after all of this happened yesterday, I received a phone call last night from a friend who is a respiratory therapist. She had just met a new patient who had just been diagnosed with PH and was having a lot of anxiety and was really scared. She asked if it would be ok if she gave this young woman my name and phone number. Of course I told her that I would love to visit with her and share as much as I could. I'm a very, very firm believer that knowledge is power. I hope that she will contact me.
So, that is the story of my "PHull" day. Thanks for reading.
:)
Annette

Busy Weekend, Tired Old Woman....

Well, Rod and I went to the Josh Groban concert on Friday. About halfway through I realized that it wasn't such a smart idea to go to the concert. I was really, really tired and my incisions were sore (it didn't help that I was wearing jeans for the first time since the surgery. It just didn't feel appropriate to wear sweat pants to Josh Groban! Now though, I wish I had!). So, we left. Every security guy we walked past said, "Are you leaving?" and gave us this look like we were insane! I should have either sold the tickets or given them away. The few songs we did hear were wonderful though!
On Saturday morning, Rod went to the airport and picked up Chris while I slept in for awhile. Then Nick came out to the house and the four of us drove to Lincoln for the first Husker game of the year! We had a "tailgate" party with people from Rod's work first, then we went to the game. There was quite a bit of walking involved. I could tell that I've been "sitting on my butt" for the last couple of weeks! After the game (which Nebraska won 52-10, Mrs. Harris!!) we went over to my sister's house to tell my niece good-bye! She moving to Taiwan on Tuesday. She's going to live there for a year teaching English. Then we came home.
This morning I overslept and we missed church. I hate it when I do that! This afternoon Chris and I went to the wedding of a young lady that I taught in first grade. She ended up going to high school with Chris and was part of his group of friends! After a cupcake reception I came home and here I am...pooped!
OK, that's it. I'm going to go and mix my Flolan and go to bed!
Thanks for reading!
Annette