06 February 2012


We were frequently called twins she and I. When together we looked it. But it was only on the outside. She had it much worse on many things. Both of us were brought up by grandma to a large degree. We spent so much time there that we frequently fought like siblings.
She was quieter and nicer than I was. But we had a bond that didn't require the same mother. When you share the same struggles it is easy to bond.
I was not able to see her in the hospital that much because you had to be over 14 to visit (I was only 9-12 when she was in the hospital.) Funny for a children's hospital to restrict the age of visitors. She made many friends in her short life and was always raising awareness. When I arrived at the hospital it was already prepared for me. Sadly we never were able to terrorize together. My first time in was just a few months after she died.
I got to see her in her last hours. It was good. She was very peaceful. I got to say goodbye and we shared a moment that no one even knows about. That kind of moment that only twins can have. Knowing that she was heading out before me I knew that she would be looking out for me. She has always been there. Even now I can think of her and I know that she is there bringing me strength, reminding me that the fight isn't just for me, but for others as well.
Happy 37th!

10 November 2011

Shooting Star!

How do you ever prepare for something like this? Never in my wildest dreams did I expect to have to write something like this. I always hoped it would be the other way around. Yet it seems it is left to myself and someone else to always witness and report on these things. It has taken me a few weeks to get to the point where I could even start writing about it because of the shock and sadness it has caused.
You may recall from previous posts that I had a little sister with CF as well. She died when I was just 6 years old. I think of her and my cousin often and how I know that they are around helping me and pushing me to work hard to stay alive. As you may have guessed from my "ghost blog" using a pseudonym, I am a private guy. I don't let a lot of people into my emotions. Nor do I allow many people into my life in the inner circle. The one where they know what is really going on. This place is reserved for people who appreciate life and all the things that come along with it. For people who want to really know "How I'm doing".
This last month I received some bad news concerning a dear young friend. Someone who was immediately allowed into the inner circle. Someone who for all other purposes became that little sister that I had lost. She was just 2 years old when I met her. She was crazy and funny and loved to "run to the playroom" or "run to the fountain". We spent a few weeks together at the hospital. It was her first time and my 20th or so time. I spent many nights talking to her parents who also became fast friends. People who you can just tell care about others. How the years fly by. Isolated by illness, life heads in every direction. But there I was, always keeping tabs. Hearing about the drill competitions. Hearing about fun times. Hearing about trips and travels around the country. Celebrating the graduation from a far. A young girl doesn't need a crazy old man hanging around right...

A hand printed 6x8 black and white photo on the shelf. I reflect on often. I was there when she started the fight. It is obvious that she knew what she was doing. Her smile and attitude drew all who could see real wisdom. Small of frame, but large of heart and experience. The fires of affliction brings understanding that few can grasp. She learned that the only real control in this life is in love and patience and smiles.
So here I am writing this. Losing one again? How is this supposed to be easier?
Next time it will be her turn to show me the view from the windows...

05 March 2011

Running to Stand Still

JG and I had a late night conversation recently about me being sick and "doing too much". Sometimes JG and others get concerned about me doing so much and me pushing myself too hard. At times doing things when maybe I should be resting or something like that.

I will admit there are times, when in my mind I think, geez I would love to just crawl back into bed and sleep for a few more hours. Times when sitting in the shower thinking, man it would be so nice to relax in a hot bathtub to loosen my hips or shoulders, and enjoy the hot steam in my lungs. But who doesn't have these thoughts. Just because I have a better excuse to do those things some days doesn't always mean I should give in.

There is a reality to living with a long-term illness. That reality is that sometimes I don't feel great but life has to continue. Most people in life can stop when they are sick. They stay in bed for a few days until they are better. They miss a function here or a dinner date there. They stay home instead of going with the kids somewhere. They always have plenty of time to see the kids playing in the park, or doing their little dances. They can always hit the next movie with their friends or hang out some other time.

The reality of living 100 years in potentially only 50 years is that I gotta squeeze twice as much in. I can’t just sit out and wait for the next game. I can’t just wait until spring to see the kids playing in the park. I won’t just wait around for the next show to see my friends and hang out. Life waits for no man. And for some of us, life is rushing past at double speed.

There may come a time when I don’t have a choice anymore about staying behind or not visiting others. A time when those choices are made for me, similar to my choice for waterskiing, mountain biking, jogging or snowboarding (refer here). But until then I will push the very edges of my health. I will live life as much as I can stand, until I cannot stand. I will suck wind carrying crap up the stairs, because I still can. I will hack and sneeze and cough when raking leaves because I can.

Please be advised, I will continue to worry people, until I must stand still.

25 November 2010

25 May 2010

Things You Never Want to See When You are in the Hospital

Forgive me for the number of pics in this post. But these are a few things you don't want to see when you are in the hospital. These are in no particular order but all have happened in the last 2 weeks while I sat in my box.

First on the list - Snow
Nobody wants to see snow in May, especially the last part of May. Luckily JG was already at work when it started, and by the afternoon it had melted away.

Next - Happy Birthday Banners
Spending your birthday in the hospital is one of the lamest ways to spend a birthday. This isn't my first birthday in the hospital and probably won't be my last, but I hope it is a while before I have to do it again. Although I must say that JG did make it as fun as possible by decorating the room and putting up the banners. She also picked up cupcakes from So Cupcake for me to hand out to anyone who came into my room.
Yummiest cupcakes ever!

Last but definitely not least - Tree Damage
Yep that May snow storm turned to heavy snow/ice in the cold rain that followed. It broke 1/3 of a very large tree in our yard and it fell on our telephone line. Luckily it didn't break, and luckily it wasn't the power line. There was other branches broken as well.

17 May 2010

Judgment Day is Coming

So I was lounging in the hospital today taking deep breaths. Ya know all less than 1 liter breaths I can take. And I decided that Judgment is coming. Yep sooner than we all think. It's always that way. And when we are all milling about in heaven, God's gonna be calling out names and doing interviews. And then I have requested that he pass ya'll on to me. Yep, I have some of my own questions for everyone. Ok really just one question. With all that air, why were you not running from place to place with abandon? How much TV did ya'll watch instead of hiking or fishing or maybe working in the yard? One day, it may be a while, but one day I'm gonna find out what it is like to have good lungs, plenty of air, easy breathing. When that time comes ya'll better be ready to answer some questions...

12 May 2010

Making Juice

So that's all I've had today, how about ya'll? Yep cranberry juice so far. Can the hospital process be any slower? Here I have sat for 5 hours. I have a room, but for some reason no doctor and no orders yet. JG was right, I should have waited at home and come in during the evening. It seems that nothing gets done on the first day. I could have grown the cranberries and made my own juice by now...

17 February 2010

And Suddenly There it is...

When Ostriches Attack

Let's just watch the image for a minute... Wait for it... wait for it...

Yep sometimes life can sneak up on ya. Just like an ostrich at a wildlife preserve. I recently had a nice stay in the hospital and sadly it was only 4 months since my last one. I realized that life had suddenly caught up to me. Being nearly 35 years old and having only 25% of my lungs. Things caught up real quick. I really like the way my friend Lauren put it:

"Imagine for a moment that you are trapped in a room that is slowly emptying of breathable air. You feel as though a weight is pressing upon your chest; no matter how panicked you become, you can’t even summon enough breath to cry out for help. You try to hold as still as possible, knowing that every additional movement robs you of your precious and rapidly diminishing energy supply. That’s what pneumonia feels like to someone with cystic fibrosis."
-- Lauren Beyenhof, 1980-2009

With that kind of wake up I realized it was time to step it up. I apparently needed to do more to keep my status quo on health. So I came up with an idea... walking. I know, I know it sounds simple, and honestly it is. I always criticized people who didn't exercise. "You just gotta make time" I would say. Apparently it is harder than I thought to do that. Man you'd think you could get away for 45-50 minutes without a problem each day. But no, the elements and people combine against me. In the hospital I was doing every day, now that I am out it is a struggle to get 3 days a week in. Life just happens that way sometimes. But I am committed to 3 days a week, no matter what that means. Eventually I hope to be able to actually run. But it takes time to condition your body to run on such low amounts of lung capacity. But I have patience. Maybe I should tell you what I think about patience also:
"Patience is easy for those of us that don't have long to wait."
That's my own little bit of wisdom for today. Now get out there and exercise, if I can anyone can.

04 November 2009

Lauren Beyenhof

Goodbye friend...

Your inspiration will be missed by all.

30 October 2009

Last Song You'll Ever Sing

So there I was. Minding my own business driving my 40 miles home from work when I realized what I was listening to on my ipod. It was Paramore, a band that is okay, but not great. Suddenly I was struck with a few lyrics that I just had to share:

Everybody sing like it's the last song you will ever sing,
Everybody live like it's the last day you will ever see.

I know it's not anything new, but today it struck me more than it ever has. I guess it's because lately life has been "very interesting." I feel like I'm barely living day to day, sometimes it seems like week to week, and the days are just mushed into one. Not that it's boring, there are plenty of struggles, but I seem to just go on doing the same thing I have been doing. And I'm getting the same thing I always get. One more line from the same Paramore song:

We were born for this...

We really were born for this. For being here and living, for learning and loving each day as it comes. We will constantly have our challenges. Sometimes I think I will drown in mine. Sometimes they seem to overtake me. But life goes on. We need to figure out how to change what we are doing in such a way that we get things in life that are better for us. Moving forward is sometimes a huge challenge because we avoid change, even if it might be good for us.

It is time to step out. Time to reach to new places. Places higher, not lower or equal. Time to change for the better. Time to sing, like it's the last song you will ever sing. Try it in your car next time. I know I will in the morning (or later this morning.) It's time to live, live like it's the last day you will ever see. Tell people you love them. Let people know when you appreciate them, and be patient with those you aren't appreciative of. This is what we were born for. To live life and to enjoy life and to learn and grow.

24 October 2009

My Best Friend

How do you say it?
If I say it, then it becomes true.

Aug 10th. I've seen that look before. Eyes strained. Quick breaths. I've seen that look in the mirror before. I know what it feels like. The feeling that no matter how much you breath it isn't enough. No matter how fast or how deep it doesn't seem like enough. Mostly you sit or lay so that you aren't using any energy. But the eyes, that is really where I recognized it. I have seen that look before in other friends. All of them had Cystic Fibrosis, and all passed away shortly after me seeing that look.

That look, the look of being tired of the struggle. Tired of the fight to breath. Yes some of us have to actually fight to breath. It can be a constant and exhausting battle. Some days it isn't too bad and other days you just want to crawl back into bed and sleep it off, that is when you know it's bad.

He was sleeping more than ever. Hesitating more at going up and down the stairs. Coming through the door and relaxing on the floor and never breathing deeply. Even it his sleep which had been fine for years he was agitated and sometimes rapidly breathing to stay alive.

It is extra hard when you recognize that there is nothing more you can do. Nothing to help, and worst of all, the best of drugs are only prolonging (and not that long) the suffering visible in the eyes.

It was time to make the call. He had been getting worse for months. He was on a high dose of lasix, among other meds. We had been prolonging with great success for some months. But the increase in the lasix was no longer helping. Age was a factor also. At over 80 years he had lived a long time. Although it didn't seem long enough to us.

There is a hole in our family now. A hole in our hearts and our lives. Not to mention the empty bed, and stuffed puppy toy that no longer is used as a pillow for living room floor naps.

Our puppy Jack passed away on the 11th of Aug. I couldn't watch the eyes anymore. I would want it to end, and I know he wanted it to end. He was so peaceful. JG and I were there for the entire time and he quickly slept and passed.

JG gave Jack to me as a gift before we married. He had been my constant office companion for 13 years. we had lunch together on Wednesdays when I worked from home, we napped in the living room together more times than I care to admit. He constantly kept me company during treatment times at night (like now.) After 2 months I still look behind me before I roll my chair to make sure he hasn't snuggled up to the wheels like he did sometimes. I get home from work and still walk to the back door thinking I have forgotten something...

People keep asking when we are going to get a new dog. I guess they don't understand. Jack was a part of the family. He wasn't just a dog. He was a best friend. There is no replacement for that.

20 June 2009

Red and Spicy

Been 5 months since I posted. A lot of craziness has ensued of course. Life in general is like that isn't it. It seem so much a blur. I really wish I had stopped more often and enjoyed the last few months. Work has been crazy. The last 2 releases have been double releases and ahead of schedule. The yard work has been phenomenal, of course our yard looks great and that is always worth it. The roses are in perfect shape now, it only took 2 years to heal 10 years of neglect from previous owners. We finally got a vegetable garden planted this year, and I have radishes! I love radishes. I have been plucking them from the ground the last few weeks and eating them. The last batch I had 4 the size of golf balls. They were fantastic.
We have flowers galore in our yard and potatoes and tomatoes and squash, but me, I'm a radish guy. Radishes are fun, you never know how hot they might be when you bite into them. And they taste great with salt, which any CF'er knows we need a lot of. Some people they might tell you, "Slow down, smell the roses once in a while." But not me. I'm all about the radishes. Give me something a little spicy, a little unpredictable... that is real life.

19 January 2009

Here it goes again...

So Christmas was especially great. We spent the time in Texas with JG's sister and her 2 kids. Doing things like this (Yes that is my face behind the arm):

And looking at things like this:

I swear it's not a rug... ;)

Sadly starting about New Years things haven't been so easy. Rather than bore you with the long drawn out whiny details I felt like the following song describes the last 3 weeks of my life (honestly when I started this part I swear it felt like it had been 6 weeks, ya know.) You can make your own assumptions. One thing I do still have is hope. As you have probably heard, during life there are mountains and valleys. We must pass through them all. I hope you enjoy the song. Read the lyrics first, then at the bottom go to Youtube for the fun video from Ok Go.

It could be ten, but then again, I can't remember half an hour since a quarter to four. Throw on your clothes, the second side of Surfer Rosa, and you leave me with my jaw on the floor.

Just when you think that you're in control,
just when you think that you've got a hold,
just when you get on a roll,
here it goes, here it goes, here it goes again.
Oh, here it goes again.
I should have known,
should have known,
should have known again,
but here it goes again.
Oh, here it goes again.

It starts out easy, something simple, something sleazy, something inching past the edge of the reserve. Now through lines of the cheap venetian blinds your car is pulling off of the curb.

Just when you think that you're in control,
just when you think that you've got a hold,
just when you get on a roll,
here it goes, here it goes, here it goes again.
Oh, here it goes again.
I should have known,
should have known,
should have known again,
but here it goes again.
Oh, here it goes again.

I guess there's got to be a break in the monotony, but Jesus, when it rains how it pours. Throw on your clothes, the second side of Surfer Rosa, and you leave me, yeah, you leave me.

Just when you think that you're in control,
just when you think that you've got a hold,
just when you get on a roll,
here it goes, here it goes, here it goes again.
Oh, here it goes again.
I should have known,
should have known,
should have known again,
but here it goes again.
Oh, here it goes again.

Ok Go - Here it Goes Again

10 December 2008

Jack in the Box

So after 10 days and a few more to look forward to this is how I am feeling. Although to be honest the food isn't as good as the Jack in the Box and that is saying something.

The words that have been going through my head all day are from the song by No Doubt:

Trapped in a box, four walls as sky
Got a screen for a window about two feet wide
My mind rides and slides as my circuits are fried
No room for thought, use the box as my guide
Trapped in a box

A sad commentary about american television, but the lyrics also apply to those of us that get trapped in a box for weeks at a time, a few times a year.

You can check out the video here.

Yes that is the famous Gwen Stefani as the lead singer of No Doubt. Which she did way before her solo career. As a music lesson, this was No Doubt's first ever video and cost $5000. It was never played on air.

So I am a Jack trapped in a box. But the good news is that I should be able to get outta my box on Friday afternoon.

08 December 2008

Hospital Cutbacks

Well it appears the economic hard times have hit the health care system. I swear every time I come here the pillows get smaller and smaller. The food portions too. The bed is long but skinnier. The red pillow is mine from home. No, its not a king size pillow, just your average target pillow. Next time I come its gonna be an airplane pillow and blanket on a footrest, I'm just sure of it.

So far feeling ok, but getting better. Just no sleep as usual.

16 November 2008

Ice Cold Water and Salt

This is just on recipe for getting blood out of clothes. I just used cold water and it came out. Where did the blood come from you ask? So it was new port "Inauguration" day today. Wouldn't you like to have one of these coming right for your chest.

Just in case you didn't know when you access a port for the first few times, it is pretty painful, and man does it bleed! We finished the dirty business and I put a band-aid over the gigantic hole. Within a minute or two I could feel something wet on my chest. I peeled my shirt back and there was blood running down my chest and soaking through my clothes.

Luckily I had brought some tegaderm for the occasion just in case. Tegaderm is a nice plastic dressing that I have lived on for all my life. For me its like comfort food, only comfort dressing. We hospital freaks are strange but it was nice to have the trusty old Tegaderm covering the port.

It was definitely a relief to test out the new fancy port. It worked like a champ. I can't remember the last time I had a port that flushed that nicely. Lets hope it is not needed for a while, but if it is, I'm glad it's in and working.

20 October 2008

Looks Like We Made it

Summer is finally over. I know that sounds terrible, but it will be nice to get to the snow shoveling and know what I am up against.
So I haven't posted since the last hospital stay when my port died, and honestly I have been worried about it since then. You just never know what complications your gonna have when you have surgery. Luckily its all done now in the Angio lab with local and drugs. It honestly wasn't so bad. It looks bad but the bruising will heal.
So since I have neglected I thought I would post some info about this summer. It has been busy with lots of family visiting and even a few trips. So first lets establish this. Here is Jack the dog, my dog, he looks close to how I feel right now.

The stuffed dog next to him is his faithful playmate, although at 12 years old (72+ in dog years) he doesn't get a whole lot of use, except as a pillow.
So the 4th of July came and went. We had some visitors for most of the month of July... enough that at one point I had a large tent up in backyard for some people since there was no room in the inn. JG always has great decorations as seen below, we also had the yard lights up. Small Christmas lights we string from the house to trees in back 4-5 times across the yard.
It can be very nice to sit out in the summer air and look at the lights while relaxing in the hammock.

That is one thing I didn't do enough of this summer is sit in the hammock. It kinda feels like I was running all summer, hence I feel like Jack the dog looks.
During the visits we did have time for some pool fun. It was just deep enough that I had to get in with the 18 month old nephew to keep him a float.

We visited some local gardens, which are beautiful, they had this great gazebo which I took a bunch of pictures of. They seemed to need a little contrast to me.

Along the way I felt like I didn't stop and enjoy the moments enough. Sometimes it was just shoving as much into the day as I could. Although we had many wonderful flowers this year that Costco assured us would not grow, yet they grew anyway.

The greatest lesson learned this summer. Skip and jump as much as possible, it will keep you young.

06 July 2008

Happy Birthday to me...

Ok so I have purposefully been postponing this post. Sorry.
The hospital was pretty traumatic this last time and I am just barely able to think about it clearly.
So this is a port-a-cath. It's a permanent IV placed under the skin in the chest. My friend Lauren did a flash demo of the port and the port access. It pretty cool, but be aware it shows someone poking a needle into their chest. Port Slide show.

So for someone with CF the port can be pretty important. For me it is a sad necessity. Picc lines don't work on me, I've had too many. I only need it when I'm in the hospital, but so far that seems to be at least once a year. Peripheral IV's don't work too well with CF, the drug doses we take are so concentrated that it burns the veins... literally.
On to the juicy details...
So I access my port on Mother's Day. It is sluggish but seems to work ok. The next day I go into the hospital. The port is even worse. But seems to work ok. By day 3 its basically not working at all. It takes 3 minutes to flush the port. The pump has no problems with it, but flushing with 10cc syringe just doesn't work.
Now its time to get serious. I tell the nurse we should probably re-access since it seems like it might be poor needle placement. It takes her 3 tries and she can't get the needle placed. Time for drastic measures. Fluoro.
They take me down and decide they want to pull my line straight (its had a loop in my vein for about a year). So we prep and I tell them I want to be awake for it. Just local. So the procedure is essentially a heart-cath, without going to the heart. They inserted a tube in my groin vein. Then ran up to the end of the port line with a lasso and grabbed a hold.
Tug, tug, I'm feeling them pull on it. Its not feeling so well. I can feel the tug in my neck. For some reason the line doesn't want to come loose. Well They decide to try a contrast flush on the port. It takes the flouro nurse 3 tries to get a needle in right... My chest at this point was a bloody mess.
They flush with contrast, its slow but runs perfect. The contrasts flows right out of the end of the line. It seems faster, and so we decide to leave the needle and close up shop (meaning my groin cath.) The loop still there, the needle in place but the line performing poorly. Happy Birthday Eve Eve!!
So birthday eve morning, TPA day. They run TPA ( a anti-clotting agent) into me for 3 hours trying to get the line to open up. It doesn't open. On the plus side I did enjoy Shaun of the Dead during this 3 hour tour of TPA.
So on the birthday, I decide Im feeling better, its only been 10 days but I do feel better and I am ready to go home. So I get discharged.
Day 2 at home and my line is completely closed not working at all. I call the doctor and we decide instead of doing surgery this close to my hospitalization we should wait, and I can finish Cipro on oral drugs.
So this is my traumatic birthday hospital celebration.
Lessons learned:
  • More dedication in my monthly port flushes. I am good but there have been times I went 5 weeks instead of 4.
  • Nurses only get 2 shots at the port before they have to find someone new. I worry that I scarred a new nurse that was watching when they were trying to get it to work. Poor kid.
  • Flouroscopy is cool to watch.
  • Going into shock in the flouro room is not good and is not fun.
  • I talk a lot when I'm nervous. I am sure that I was completely entertaining(or annoying) to the medical staff during the procedure. I don't think I ever stopped talking, even during the shock.
  • Blood pressure can drop a lot during shock, and it doesn't help the shock at all to know and see it.
  • It takes me a while to process this kind of stuff to be able to even write about it.

The good news, I had fantastic sushi the night of my birthday at this place right by our house that we love. And this was on my plate.
The sushi chef is a true artist. This is one piece of carrot cut and twisted to look like a butterfly. I am glad that there are beautiful things to live for each day, since some days I wonder why I am still trying. And especially after hospital experiences like that last one.

08 May 2008

You are here!

Oh wait, that's where I am, not you. Going back in folks. If you are around the area feel free to drop in.

29 April 2008

The Wise Man Built His House Upon...

OK folks, here is the stuff you have been waiting for. The completed kitchen. Please ignore the lack of paint in some places, that is my fault. You will notice a lot of stone. Granite counter tops, Travertine floor and back splash and window sill. We love it!!!!

This is the beautiful window.

This is angle 1.

This is angle 2.

10 April 2008

Life Lesson at the Hardware Store

So there I am in the middle of life. Ya know crazy, running around. And right now its even worse than usual. JG and I are remodeling our kitchen. The house is in shambles. There is dust everywhere. And I was looking at appliances at the local big box. I took my camera so that I could show JG what I had found and get her opinion without her having to go. Her work is extremely busy right now, and I figured she may not get to see it if I didn't take pictures.
Who would have thought I would run across this kind of saying. I know that at first you read the English "Look inside" but that is not what I was talking about. Although the English is true and profound, I was looking at the Spanish. I remembered the words, even from my High School Spanish class. "open the door", or literally "the open door."
We all have so many opportunities. Sometimes for really profound things, sometimes for simple things. I've been thinking about this since one of our neighbors died this week. He was 98, 10 days from 99 actually when he died. JG and I were drawn to him for some reason. We would sit with him at church and talk to him when we could. I would always come into church and JG would poke me and say, "Go say hi to Harold." Now, I don't know if he cared or not, but he would always smile and talk to me for a minute. The last time we saw him at church he was asked to stand up and talk about his favorite church song. He got up and spoke while we were sitting there next to him. He was so strong and powerful. He brought JG to tears. 3 weeks later he is gone and returned to our Heavenly Father. I know that he is happy.
I hope that I continue to open the doors, and also walk through those doors that are already open. And I am very glad that JG pokes me through some also.


Less serious note. Here is our kitchen in shambles.

15 March 2008

100 Things

OK so some of the people on the cf messageboard posted 100 things.
I thought I would put mine here, seemed like a great blog idea.

0. Jack isn't really my name, but it is the name of my dog.
1. I am paranoid about Internet anonymity.
2. I wrote #43 first in this list, I did the entire list completely in random.
3. My wife is my greatest asset against CF.
4. I have won awards for poetry.
5. CF has killed 3 people in my family. I am the lone survivor by many years.
6. I love slippers. Sometimes I wear them for the day, everywhere.
7. I'm a Mormon.
8. I once rebuilt a Volkswagen Rabbit (Diesel) Transmission.
9. I NEVER NEVER NEVER forward messages that say "Forward to everyone." I hate them.
10. I was taught to hide my feelings.
11. Currently I am reading 3 books.
12. My wife calls me Frank and I call her Francene.
13. Frank isn't my name and Francene isn't my wife's name.
14. I love reading National Geographic, its the only magazine that I keep all my issues.
15. My biggest hospital pet peeve is people not knocking and just walking in. "I'm sorry, I didn't hear you knock..."
16. I was a Lifeguard during High School.
17. I still feel guilty about what my family missed out on because of my CF.
18. I always wanted to write a book.
19. I remember every detail of my younger sisters viewing... I was 6 years old.
20. I am exceptional at what I do, and I know it!
21. I believe in freedom of choice.
22. I drink Mountain Dew almost constantly.
23. I prefer to watch oriental kung fu movies in the original language, with english subtitles.
24. I discern people very quickly, it's a gift.
25. I never judge people, its different than #24, look it up.
26. I had to quit snowboarding because of CF, I hate it.
27. I get more like "Monk" as I get older with CF (Germiphobe.)
28. I am a terrible driver, and I know it.
29. I have read more than 1000 books since I was 14.
30. My Arthritis hurts every day. I ignore it.
31. I volunteered at the local children's hospital for almost 10 years, beginning at age 12.
32. I have read the entire King James Version of the Bible, Old and New Testaments.
33. I feel guilty for still being alive more often than I should.
34. I have serious OCD, but it never keeps me from sleeping.
35. I have serious OCD, but not many people know it. I constantly count things.
36. I think that man in general is very arrogant to think that he can destroy the earth. In reality he will destroy himself long before the earth is destroyed.
37. I believe that a boy of 14 saw Heavenly Father and Jesus Christ in 1820 (see #7.)
38. I use music as a coping tool, it "calms the savage beast" as they say.
39. I don't sleep more than a few hours at a time, even at night I wake up at least 3-4 times each night.
40. I collect Music Videos online, I have over 800.
41. I often wonder why I am still alive.
42. I use commas gratuitously.
43. I am frequently under-estimated.
44. I can have a commanding presence in spite of my size.
45. I did photography as a hobby and loved it.
46. I did photography for a living and hated it.
47. I have been 5' 3" since high school.
48. Being short is not from my CF, but from my mother.
49. My schooling is in Psychology and I run websites for a living.
50. I am way more satisfied with myself than I should be.
51. I quit counting near death experiences after the 10th time.
52. My most recent near death experience was in December 2005.
53. I had to quit skateboarding because of CF. I hate it.
54. I seek out deadlines.
55. As a kid I lived on Twinkies and Milkshakes frequently.
56. I can't eat Twinkies anymore.
57. I sing in my car whenever I am driving.
58. I never planned on getting married.
59. The first time I saw my wife I knew I was going to marry her.
60. I don't believe I'm worth the amount of money my drugs cost.
61. I wish I could do more to inspire younger kids with CF.
62. I have won awards for photography.
63. My wife is very "expressive" of her opinion. I LOVE that about her.
64. CF has limited my career.
65. My wife is paranoid about me dying, and I guess rightfully so.
66. I love the vampire genre, I think it has to do with the idea of living forever.
67. I'm not as geek as most of my co-workers.
68. My "Mountain Dew" gut bothers me more than I thought it would.
69. My ancestors died in Illinois and Missouri in the 1840's because of what they believed in.
70. I am a history junkie (as evidenced by my job at footnote.com.)
71. My brother has done many things that I would have done had I not been born with CF.
72. Patience is my second greatest asset against CF.
73. I believe in consequences for our actions.
74. I sometimes wish people would receive their consequences immediately.
75. I'm a lot older than I ever expected to be, since I got my wife, I'm glad about that.
76. I miss my friends with CF, most have died.
77. I love eating dry Cheerios with a can of Coke.
78. My work requires crazy hours and occasional 30-40 hour days... and I love it.
79. The best thing I learned in college was how to juggle.
80. I consider that I have 2 full-time jobs, CF and footnote.com.
81. I feel bad for dragging my wife into life with CF, but I am glad she is with me.
82. I sleep the best with loud heavy metal music playing on my ipod (this works esp. well in the hospital.)
83. I had to quit waterskiing because of CF. I hate it.
84. I love to stay up and talk with my wife for hours on end.
85. Apple Computers! Not only stylish, but UNIX.
86. I love the east, Japan, Korea, China. I especially love the food and the history.
87. I have 5 year range goals.
88. I love snug harbor (in New Orleans, look it up.)
89. I know the meaning of life, but you probably don't believe me.
90. Most of my growing up lessons I learned from Grandma and Grandpa who took care of me quite a bit, while mom and dad were trying to afford me.
91. I spent every Christmas holiday between age 12 and 21 in the hospital so that I didn't have to miss school.
92. I spend a lot of time just thinking about things.
93. I believe Caffeine helps people with CF.
94. My parents used this phrase too often for me. "We never thought you could do it."
95. Sometimes I get so tired of CF I think that death might not be so bad.
96. The day I no longer work full-time will probably be the second saddest day of my life.
97. My favorite birthday was my 30th... we had a huge luau with all sorts of people from my past.
98. I am glad we are all different
99. I think more lists should be zero based.

29 December 2007

Fresh New Face!

So I walk into the beatiful new place. Large spacious room, full size sofa, brand new flat screen TV, DVD player, gigantic 6' by 6' picture window facing the smaller of the 2 Utah mountain ranges (although still not so small.)

So I think to myself, "Wow this is a nice place.... I hope some of my respiratory therapists(RTs) have come over from the old hospital."

Isn't that amazing. When the engineers build the rooms and the company decided to spring for the flat screen TV's, and in all when they spent over 550 Million dollars on this medical complex... do you think that is what they wanted me as a patient to have as my first thought?

Truth be told I was worried. At my first hospital I spent 10 years as a child training people to do things my way. See I didn't go to the CF Clinic at the University Hospital like most kids with CF. No I had my own Pulmonologist. I had a person I considered a friend taking care of me. Considering all the time we spent together and all the things we talked about thats how I viewed my first doc. He understood me. He realized that some things were scary for a kid in the hospital. I went to a children's hospital, which was perfect since back then I was a child.
It took me a few years to realize who I liked to be my nurses and my RTs. The ones I trusted and enjoyed company from. As a person with CF you spend a generous amount of time with RTs. For my 5 times a day treatments, thats more time than I spent with nurses.

My second (adult) doc who I interviewed from a list of 4, is very similar in nature to my first one. He understands that I have to run my own care in order to survive. He listens and we decide what's best for me together.

When he told me he was finished with regular clinic but he still was going to see me and his 3 other CF patients and one asthma patient exclusively, I knew we had reached a new level of care. Then recently he took a promotion to Chief of Pulmonary, Critical Care, and Sleep Medicine for the main trauma center here in Utah. But he would still be seeing his CF patients and one asthma patient. But we would have to go to the new hospital and the new clinic he had.
Well clinic is fine I rarely see him there. I'm more of an e-mail doctor visit kinda guy, but new hospital made me a little nervous.

So jump to 2 weeks before christmas. I decide I need to go in. We set it up. And I arrive as scheduled at the new hospital. The picture above is from sitting on my bed looking out the window.

Its a fantastic structure, but honestly it could be a shack with O2 running to each room for all I care. No matter how cool the stuff is or how big the window is, it's the people that make the difference. I know that the engineers and the administration didn't really think about that when they built it, but hopefully they will ask and I can tell them.

So how did it turn out? Well I got all new nurses. The nurses that I used to see were on a different floor. But luckily I had all my old pals from the respiratory department. I can retrain the nurses easily... basically "Don't bug me unless I have an IV due or a meal." They were wonderful and very professional. But I was so glad to see my old crowd of RTs. When coming to a new place and a new floor, it was such a relief to have those familiar faces knocking on my door every 4 hours (except between 10pm and 6am) to visit me.

I hope the administration knows that its the people that I love and they are the ones who make the difference when I am stuck staring at 4 walls for 10-12 days. Not that the large flat screen TV's are bad... ;)

17 October 2007

Fallen Warrior Tribute

It's a war out there. Every day a battle for life, for breath. All around me lay fallen warriors. Struggle as they might, they finally fall.
Who is the great enemy? Who is it taking innocent lives? How could this continue? Why hasn't anyone done anything? The enemy is Cystic Fibrosis. It rages in a gripping battle inside each of us with CF. It is a cunning foe. Attacking from the inside so as to divide the battle between so many places. The liver, the kidneys, the pancreas, the lungs. It is a battle of hopeless intent. We will all fall eventually. It is not a matter of "if" but "when".
CF kills everyday. Will it be me next?
This is a blog memorial to my fallen brothers and sisters in lungs. So many that I know have died. Even now some days I have huge amounts of survivors guilt. And survivor jealousy.
Siblings, cousins, close friends, acquaintances. Some old some young. Most young. Most before they were able to find themselves. Running confused into their teenage years and never coming out. I have known many that have passed the test of CF. Their love and example ring out to me. Their strength fills me from beyond. I continue to struggle to show that somehow possibly we will overcome the enemy. But in my heart I know it is not possible and the best I can do is win a few battles before I lose the war.
September/October for some reason seems to be the time of loss for me. I have lost many friends in these 2 months. And just this month I found out that 3 friends from the past who I thought alive and well have all been dead for some time...
This was a major blow to me and really hurt. All I can do now is know that they are finished with the battles and the war. They finally are free and cured of CF.
So as I look back on September/October I will remember the ones I love and hopefully make them proud as I continue to fight.

13 September 2007

Lost and Found

So last week I found something I had lost. Or I guess the correct way to say it is that I was lost and someone found me. I had been lost for a long time. And just like something lost for a long time, I had nearly forgotten how nice it was to be found and how much I missed it. For someone lost in the struggle with CF it can be a lonely road. We are forbidden to have contact with other CF'ers for fear of cross-infection. There is rarely anyone who really knows what it is like to have CF, so relating to people can be hard. Especially when you want to relate about CF.

Well I have been found, Katherine Heigl (at least she looks like Katherine Heigl.) Found me on google, or actually found an old website that I haven't updated for a long time. She had the courage to send me an e-mail, after me being lost for 18 years. I say courage, because it takes courage to do that. What if I didn't remember her, what if I just blew her off. Well of course I remember her. And we quickly renewed our friendship right where it left off, just like we hadn't been away from each other for nearly 20 years. Also KH has been through, what I am. Strangely enough she was diagnosed with CF. We grew up at CF camp together, then one year they did DNA testing on all the CF patients at camp. There was about 12 people who suddenly found out that they didn't have CF. KH was one of them. So this puts her in a unique position, she understands the CF patient better than anyone. She knows what it feels like directly. There are not that many people in the world that can relate that way. So I feel like I am no longer alone in the battle. And someone found me that can relate to CF like no one else around me.

It isn't very often that someone comes along that you connect with on such a level that you can continue right where you left off. KH and I have had that connection for some time, we just didn't realize it could cross 18 years. For me it has been a wonderful journey back in time to a place where I always felt normal. A place that only those with CF were normal. The non-CF were the abnormal people. It has been rejuvenating for me to be back with someone from the old crew. There aren't many of us left these days. Hopefully KH will be around for a long time.

04 September 2007

Some Days it Would be Nice to Have a Few Extra Spoons

Maybe you don't understand what I mean. I have wanted to talk about the spoon theory for some time now. I thought I would post the link to Christine Miserandino's page that has the spoon theory story. I have talked about this kind of thing many times, but her spoon story really helps capture the image that I have been looking for. It means more since JG's sister has Lupus. Check it out, but be prepared. Don't read it unless you really want to know what having CF (or some other Chronic Illness) is like, and have a box of tissue ready:

The Spoon Theory

There is one difference that people with CF have. She talks about when she was diagnosed and suddenly had to think about things she never thought of. With CF we are taught at a young age that we need to think about these things. We have a limited number of spoons from the beginning.

22 August 2007

I'm Your Man

So today is a dedication to the one person in my life who keeps me going.
No it's not Jennifer Garner... but Jennifer Garner looks just like her. Or pretty close anyway.

My wife, JG has been there for me through it all. Thick and thin. Sometimes pretty thin. When her husband is so sick that she puts in a yard all by herself in the new house. And when he thinks he is going to die from a bad viral infection just before Christmas. All the missed vacations and holidays for hospital stays... not to mention basically living at hospitals for weeks at a time between work and visiting me in one.

She makes me want to be the best person I can and tries to help me bring that person out.

Sometimes I think people don't understand the anxiety involved with being married to someone with CF. Especially someone like me who is so quiet about issues and problems. One particular time comes to mind when we were driving to work and I said, "um, my arm is blue and numb, I think I am going to e-mail my doctor." Later that afternoon I had emergency surgery for a blood clot.

This is just one example of living with CF. You never know when the beast will strike or what will happen next. And for a girl that hates change, she deals with it pretty well.

She is truly amazing. Her Courage and love are a constant inspiration to me. To be completely honest Jennifer Garner can't hold a candle to her beauty since it is real beauty, not played on T.V. or movies.

Here's to 10 more years... or better yet, eternity with you.

(p.s. 10 points if you can name the artist and title of the song that my blog title was inspired by. No it's not Leonard Cohen.)

16 August 2007

Don't Mind the Guys in the White Coats

So Since all my little bit of college is in Psychology, I find these things fascinating. This one has me right on. Not to mention quite a compliment for JG for staying with me so long. We celebrate 10 years of marriage in 1 week.
My parents tell me that the CF has made me a thinker. I had to use my brain more since my body didn't work as well. It would definitely seem that way. My work and other parts of my life have shown that I do have a bit of a knack for thinking and analyzing. What do you think CF could do for you?

You Are An INTP

The Thinker

You are analytical and logical - and on a quest to learn everything you can.
Smart and complex, you always love a new intellectual challenge.
Your biggest pet peeve is people who slow you down with trivial chit chat.
A quiet maverick, you tend to ignore rules and authority whenever you feel like it.

In love, you are an easy person to fall for. But not an easy person to stay in love with.
Although you are quite flexible, you often come off as aloof or argumentative.

At work, you are both a logical and creative thinker. You are great at solving problems.
You would make an excellent mathematician, programmer, or professor.

How you see yourself: Creative, fair, and tough-minded

When other people don't get you, they see you as: arrogant, cold, and robotic

29 July 2007

Please Wait Until the Ride Has Come to a Complete Stop

So, been a month and a half now of craziness.
Let me explain... no, too much, let me sum up (name that movie.)
Lots of family visiting. Big party in our, "completely not ready" backyard. Very tired need a break.
So I got one. And now I am back.
Also I noticed I started my blog about 1 year ago. I remember this because I remember writing Slowly Slowing Down which detailed one of my favorite pastimes that I can no longer participate.
I am hoping to go to the lake in a few days and it will be my first trip without skiing. This will be the true test to see whether I can stick to my guns. I don't think I will even try. It has nearly killed me too many times in the recent past so I will get in the water but no high speeds at all.
As I stated before it is frustrating to have to limit activities. Another annoying issue I have been thinking about is the fact that I would love to take this job with a contract company that does work for the DOD. It has been a long time dream of mine to be a civil servant in DOD since I couldn't do anything military. Unfortunately I have to look at all the aspects, insurance, longevity, etc. If I was not unhealthy I could easily just hop from job to job not worrying about those things.
Not sure what I am going to do, the insurance from the company is terrible and does not cover my doctor or my hospital. I explained this to the fantastic guy I interviewed with, and thanked him for his time. ... one dream job down the tube.
He said he wasn't going to give up and he was going to check into some things to see if he could get some different insurance for me. That would be amazing, and I am worth it. But I bet that there is nothing he can do.

I wonder if sometimes we limit ourselves too much in some things and not enough in others?

04 June 2007

iPodSaver - U2 Flavor

I know you call it an iPod... I call it iPodSaver.
The only thing that let's me sleep in the hospital (during the day that is).
My great doctor wrote for "nothing between midnight and 6" which keeps me at nearly 6 hours of sleep a day, but then when you need a nap and the machines around you are beeping and people keep walking in "looking for something..." the ipod keeps you sane. Turn it up loud enough to keep all that out and fade away.
I prefer things that are really loud and hard for nap time, like Sugar or Queensr├┐che. But my playlist is pretty eclectic.
BNL, Sheryl Crow, INXS, Guns n' Roses, The Doors, The Nylons, Dave Matthews Band, Blues Traveler, Offspring, The killers, The Black Crowes, No Doubt, The Beatles, Foo Fighters, Simon and Garfunkel, Bon Jovi, Skid Row, Everclear, The Police, and many others.
Music calms my beast like nothing else. Sadly it can't get me outta here. Soon I will get to go and be back to myself. Sometimes it just sucks to have to slow to a crawl for 10 days.

29 May 2007

Self-Portait Tuesday

So some of the blogs I read are now doing Self-Portrait Tuesdays. So in honor of that, and my first day in the hospital I am posting a self-portrait. Isn't it a startling resemblance. My arm band broke off as I was adjusting it, so I decided it was a good SPT. Then they brought me a new one.

Took me an hour to get a room. For me that is long, they usually have my room ready. I guess it was actually ready because I got my usual Penthouse suite here at the hospital. They always take good care of me. Even though I have the bar code on my wrist that they scan when they give me drugs and such, when I am in here I never feel like just another number. Coming for the last 12 years makes a difference. All the nurses and respiratory therapists that I have worked with for so long are now supervisors and such. So I get pretty much anything I want. And the new people learn from them and keep it going.
Day one is always the worst, waiting for a room, waiting for food, waiting to see the doctor (so that you can get medicine started), waiting for RT to come and get the treatments started. Oh and the most important, waiting to feel better. It is the day I call the "waiting day".
JG is trying to sleep peacefully in her fold out bed. But of course never gets much sleep here. Love her for staying with me though. It is nice to know she is here. I just wish she could get more sleep.
So the waiting day is over, except the feel better part. I brought my new Rebel XTi with me, so I will do some photos for the blog as I go along, hopefully something cool.

20 May 2007

The big 32...

So I wanted to do something for my birthday, originally it was going to be 32 items to tell whether or not you have CF. Ya know to match my birthday, but I thought and found a bunch more than 32. So here is the entire list.

32 ways to know if you have CF (maybe more)

You do a happy dance when you hack up a huge wad of mucus, show your dad and he gives you a congratulatory high five, show your grandma, and she gives you money!

When anyone at school, or anywhere for that matter, says that spitting is gross, your family or friends hurt them... real bad.

Your doctors are on speed dial, and email, and pager, and IM.

You know more medical terms by the age of ten than most people know their whole lives.

You have multiple scars from PICC lines, Port-a-caths, IV's and other 'experimentations' as the medical community calls them.

You are so skinny that your port sticks out like a bottlecap, and you are the proverbial 'test dummy' for all the new nurse fresh out of college, "you don't mind do ya?"

You have antibacterial gel in your purse, in your car, on the kitchen counter, in the bathroom, in your office, in your friend's house, their car—heck everywhere!

You have your enzymes in at least 3 of the above locations with the anti-bacteria gel.

You can smell cigarette smoke hundreds of feet away and go searching for the source so you can ask them to trade their hopefully still ok lungs for yours so they can kill themselves faster.

You laugh at those who cry about a common cold or worse yet stay home because of it! Unless they are co-workers, then you love them for staying at home because of it.

You randomly yell at people who are coughing "GO HOME!!!"

You are truly sad for those cute little lab mice who must suffer from experimentations so we can have medicines to help us live — for about 1 milli-second than you jump for joy because they came up with something to help you breathe!

You can instruct the nurses how to work the IV machine at the hospital. And sadly you can tell which ones you should instruct, the minute they walk in the room.

Some of the most memorable times with your friends/family is hanging out and wasting time at the hospital.

You have also learned who your real friends are because most people can't take the pressure of being around a person who has CF.

You make people wince on a daily basis because of the sound of your cough.

The checkout lady at Wal-Mart has confidently told you that she just got over whatever you have and recommends Theraflu. You laugh and tell her you don't think so.

Then, you buy the theraflu, because, heck you'll try anything.

You can sleep through anything, especially beatings, in fact they make you sleepy.

Some of your best naps come in the hospital during treatment time, since it is the only 20 minutes that is uninterrupted.

You are a multi-tasker by need. While doing you're vest you MUST eat breakfast, do your nebulizers, work (or homework), make-up, straighten your hair and have a conversation with your spouse (mother) about your most current ache in your chest all at once or it would never get done.

You learn by the age of 6 that life is a gift and most people don't see it.

You have used your vest multiple times as a entertainment device for the kids because a shaking vest is a fun 'toy' and a laughing tool for the adults when you try to talk to keep up with the conversation, even on the maximum setting.

Many adults have commented to you that you are very wise for your age. You would be too if you had been through it.

Secretly you want to tell the adults that they know nothing about it...

You really did have a midlife crisis at the age of 14... "Nobody, including myself thought I would get this far, now what do I do?"

You are an adult with CF if the last one has happened more than twice...

If Albuterol and Xopenex were living things you would marry them because according to you they were sent from heaven to us CFers for a little help in the breathing department.

You lost your savings on trying to market "I heart albuterol" t-shirts (See above image.)

You get truly pissed at people who don't put yes as organ donors on their driver's license, what the heck are you going to do with them when you're dead, huh?!

You made peace with God at an early age.

You feel as if there is ALWAYS someone worse off than you somewhere. Sadly most of the time it's true, and you usually know the person, intimately.

You are constantly on the go, realizing that time stands still for no one!!!

You are constantly on the go, because you have 1/2 the years to do all the same things.

You grew up thinking that everyone in your class does machines, nebulizers, inhalers, sprays and pills for an hour or two each morning before they came to school and an hour or two after.

You are more scared of losing your loved ones, family and friends then you are of dying yourself.

Your second greatest fear is their loneliness when it comes, since you know it is inevitable.

You truly feel that God gave you this for a reason and, dang it, you're going to make Him proud, or die trying, or both, probably both!

You realize at an extremely young age that you can buy everything but time and as a CF'er that is the one thing you would love to have!

20 April 2007

Moving... ugh!
Well it is almost complete. We have packed up our life... thrown a bunch away, and moved it to a new location. It all started on a magical morning when my wife called and said, "I think it's time to talk to a Realtor". Since that statement we have been on a stressful ride. We found a place we loved. Not sure why we loved it, but it was the right place. I felt it then and I still feel it now. Although now it is mine I see a lot more of the weaknesses than anything else.
It is a good house. It is solid and well built. The problems are really just superficial, but they can get overwhelming sometimes. Luckily I know that this time I can do it. When we built our first house I was so sick. I couldn't do anything to help. My friends and family built the yard and the extra room in the basement. And of course my wife, well, she was known as the man of the house, because she was hanging out with all the guys outside working on the yard. She was buff, and still is. This time though she won't have to do it alone. Not only am I more healthy, we are in a better financial situation. So I will be hiring anything I can't do. Which at this point is: central air, shrub removal, lawn care, new siding on the house, kitchen remodel... really everything.
Soon this home will shine like new. Oh did I mention it is 60 years old. Yep, I traded my 1999 home in for a 1948 house. It has character though.
Joyce Maynard had it right when she said "A good home must be made, not bought." One thing I know for sure. In the next 6 months we are going to make this place our home. It will be the best place in the world because my wife is there with me, and we will make it our place, just like we did with our first home. After that, I can say, we bought a new "home". Until then we are just moving.
p.s. Please don't ask how I know Joyce Maynard's work... thx. ;)

22 March 2007

There's a Yellow Rose...

Well, we had a great time in Texas with the family. Brought back some unexpected items. But all in all it was a great trip.
This is basically what we did each day:
1- Get up late... you know I love this. Also awakening to my cute little 3 yo niece singing in the next room... not much better than that.
2- Go somewhere cool.
3- Do something fun.
4- Eat good food.
5- Relax for the afternoon.
6- Eat good food again.
7- Go to bed.
This is possibly the greatest scheduled vacation ever, since I am a lazy slob.
So the unexpected items we returned with:
- A brand new shiny pair of boots, for me.
- A cold... ugh.
I am feeling better today than I have for about a week, but I am coughing up junk that shouldn't be in anyone's body. We had a great time we saw the cattle drive in Fort Worth, and the animal reserve called Fossil Rim, in Glen Rose TX.
Also, we delayed our departure by 8 hours and got $1200 in "incentives" from the airlines... Yee Haw!
Funny I didn't see any yellow roses though.

15 March 2007

A Taste of the Good Life

Ok, I'm sorry the title is a bit misleading. What I meant was a taste of the CF life.
Lauren, a 27 year old woman with CF writes a wonderful blog that I read frequently. She recently spoke at the CF Foundation spring Gala, her talk is a true look at life with CF. You can go read it here.
Also, you should support her Great Strides team, here.

Lauren and I became friends when I started blogging and looking for other CF bloggers. She has been a CF spokesperson for some time now and has a great blog that you can read up on. I also have a link to it on the sidebar here on my page.
Thanks to Lauren for spreading the awareness.

14 February 2007

The Anniversary - Part 3

So yesterday was the day. The 1 year since my last admission to the hospital. Amazing isn't it. A man of 31 with severe CF that can go 1 year without hospitalization.
So the big question, why?
Why do I continue to live while all those around me, even those closest to me, have to die (or is it "Get to die?" That is a question for later). We have the same disease. Why am I different. Is it not enough for me to be different from "Normal" people and have CF. Now I have to be different from CF people too and live beyond my friends and family. Beyond doctors expectations, and beyond my own expectations.

When I was 12, and my cousin had just died, I finally had to go into the hospital, we held out until the end of that year, since my parents were worried about the psychological impact on the rest of the family. I was extremely sick. I spent 20 days in the hospital, and nearly 5 months on IV therapy. I was put on Tobramycin and one other I forget the name of. I spent a lot of time getting peaks and troughs on the tobi levels in my blood. They would shoot all over the place. This was my first experience with near death. I was on 24x7 Oxygen, I used a wheelchair to get most places since I couldn't walk without completely losing breath. It took a lot of hard work, I don't know how my mother did it, working part time(she is a nurse) and taking care of me part time (I did my own care quite often). We came up with a system where she would do my midnight drugs on nights when she didn't work the next day, and I would do them on nights when she did. This was nothing fancy either, these were the hang and let gravity do the work home IV's. Man those seem like the dark ages now.
It took a while and lots of work, but eventually I started getting better. Slowly I got off 24x7 oxygen and just wore it at night. I finally finished my IV meds. We found out I have a bad reaction to tobramycin, for some reason I lose all my white blood cells. So it was the first and last time I would take Tobramycin IV. I also found out that the cool new miracle drug that was released (fortaz) didn't work for me.

Again for some reason I lived... Pulmozyme was released at another time when I was getting worse.
Not only that I was in the study for it, Phase 2 and 3 and after the study, the company decided to allow those that were in the study to continue taking the drug, and receiving it for free until it was released. I was one of the few subjects who showed the greatest improvement on twice a day doses.

My wife and I had been married 2 years and we had just purchased a home. I was getting more and more ill for no apparent reason. My wonderful wife, worked super hard and with the help of many great people she put in our yard that year. A conquest she will never let me forget. That fall I went to a Grand Rounds at the local Children's hospital, it was on CF and Diabetes. It was being presented by Dana Hardin, she wrote the book Managing Cystic Fibrosis Related Diabetes. During the presentation she described nearly all of my symptoms, including unexplained decline in health. After the grand rounds presentation I spoke to her and told her what I was experiencing, but that none of the endo's would treat me because my HbA1c was normal all the time. She explained that she had found that people with CFRD always have normal HbA1c and that it is not a valid test for CFRD. She told me to have my doctor do a glucose tolerance test to see what I did. She also said that she and her husband had decided to move to Utah and she would start practicing in about a month and I could come and see her.
I got my gtt and my 2 hr glucose was 20(normal is 95-110, critical is <30>250). My doctor actually called me at work to make sure I was ok after the lab called him. I was definitely not feeling well and nearly blacked out driving my car. I went into the nearest mc'd's and just sat there in the lobby sucking down jelly packets, hoping to stay alive. The lab I guess never should have let me leave in that condition...
Well, I was treated and began a regimen with Dr hardin. I started insulin and changed some eating habits, and within 3 months I was a new man. I felt better my PFT's were better, everything. 3 months later Dr hardin went back to Univ Texas SouthWestern she had decided that Utah was not what she wanted. But she was around long enough to help me get back on my feet.

Dec 2005, I got real sick. The kind of sick that you don't talk about until a year later or so. There was a week during this time that each night I would pray that my sweet wife would not have to call the paramedics in the middle of the night. And I mean literally pray. I stayed up most of the time because I couldn't sleep. Also I didn't want to ... ya know... not wake up. I had just started a new job and I had no time off. I finally asked my boss if I could go in feb. He agreed. While at the hospital my doctor and I began talking of a study that was just released about Surfers in Australia. Doctors in Australia were looking for any correlation to what made some kids live longer than others, using the CF registry. The only thing they could find was ... surfing. The kids that had the best PFT's and the longest life were the ones that had the hobby of surfing. They at first thought it was the good physical exercise, but then these people were living beyond the runners and the others that also exercised. They finally did a study on salty air... which led to the new 13% saline treatment. I started this treatment when I went in the hospital 1 year ago. I attribute my good health for the last year mostly to the saline. It moves me like nothing else. I love it because it is cheap and easy to make. The drug companies can't patent it, because it is already in use... hehe. The only reason I survived that illness last year is because this saline really worked for me in moving all the crap out of my lungs.

I don't know how to explain it. I don't know why I continue to live while others don't. I am grateful for the time I have had, and I am grateful I have not had to leave my wife. I love her a lot, and she is my greatest motivation for continued health and success. I am glad to be out of the hospital still. But the question of "why" will remain unanswered for now. I will not waste the time that God has given me.

Hopefully neither will you.


So this is just a post to toast the greatest person in my life. The person that has had the most influence for good. Always pushing me to be the best, and do the right things.
She has been the lone support that I have needed, and her love and life sustain me when nothing else can.
Happy V-Day!

12 February 2007

The Anniversary - Part 2

As you can imagine with my sisters death my mother was very upset. And basically told the CF clinic that until they had something worthwhile to treat CF she would do it at home and they would never be allowed to admit me or treat me again.
She found a local pulmonologist who was one of the best in the nation at the time. Who was not associated with the clinic, and my cousin and I began to see him. He was extremely nice and took great care of us.
Unfortunately my aunt didn't handle the CF problem so well. It caused her marriage to end in divorce since neither of them wanted to have more children with CF, but both wanted to have more children.
My aunt pretty much lived in denial and treated my cousin like it was her fault all the time. Because of the lack of loving care and assistance, my cousin spent a lot of time at grandma's. Grandma had been a nurse for a long time and was great at caring for my cousin and I. My mother was a nurse also, but she worked a lot and if I was sick I went to grandma's house. So my cousin was pretty much completely raised by my grandparents, and I was about 1/2 and 1/2. Grandma and Grandpa had a huge effect on the person I became in life. And I spent many days and nights at grandma's with my cousin. As you can guess we became like brother and sister.
Our doctor worked out of the local children's hospital (the CF clinic was at the state hospital and was run by a gastroenterologist. A stomach doctor.) When my cousin was first admitted she soon found that she could gain all the attention and love she wanted from the hospital nursing staff and caregivers. They were fantastic, and to this day that Children's hospital is repeatedly rated in the top 20-30 children's hospitals in the nation.
Sadly she decided that she could get her love at the hospital, and so she neglected completely her treatments and stuff because it brought the attention she needed and desired. It was fun to visit her and play in wheelchairs and throw water balloons out the windows. But the games slowly started to get too hard for her to play. Sadly I watched my cousin get worse and worse until she was finally ready to die.
I saw her the day before she died. I remember it like it was yesterday. We were so close and had so much in common, in that situation I don't believe I will ever be able to remove that day from memory. I was barely 12 years old. She was also 12. It was Saturday and we went to the hospital to see her. Only 2 or 3 of us could go in at a time. Her mother was not there, neither was her step-father. My dad was sitting by her side talking to her and helping her. She could not talk anymore because she didn't have enough breath. I talked for a bit with her, but she barely even opened her eyes.
She had a constant Albuterol Nebulizer running into her Oxygen mask. I went back out of her room and sat in a wheelchair alone in the hall. I remember being pretty upset, but not showing any emotion (it wasn't really allowed in my family.)
I was also sick at this time (I had never been admitted to the hospital as of yet) and I had heard my mother and doctor talking about a new drug they had for CF, it was a drug called Ceftazidime, aka Fortaz. It was the greatest thing since the Pancrease enzyme according the CF Foundation. My mother was not sure, she had been in trouble before with hospitals messing with her kids. She wanted to think about it. Our doctor came over to talk to me while I was sitting in the wheelchair. He said that he wanted to put me on Septra DS tablets for 2 weeks, a broadspectrum antibiotic to help me feel better. I agreed and he left.
That was the last time I saw my cousin alive. She died the next day, Sunday 14th June 1987. My mom called the doctor, and I heard her tell him that my cousin's death was going to be too hard on my sister and myself (my sister was the other caregiver to my cousin, she spent nearly each night in the hospital with her.) and she didn't want me to go in the hospital because she was afraid my sister would crack. So I went on Septra DS again. And yet again here I was seeing essentially another sister die from the same disease I had.
I was older this time and I remember the feelings I had, and even now, nearly 20 years later I am not ready to write about those. But again I had the ever present question, "why?" that had come into my life 6 years earlier.
Come back soon for Part 3 of The Anniversary.

26 January 2007

The Anniversary - Part 1

It is only the 3rd time it has happened since I was 12 yrs old. All three times have been in the last 9 years (since I was married, and this has a lot to do with it). I am hoping to have a first anniversary of something better next year this time. This anniversary makes me think of a few things very deeply. So I am going to have a multi-post story running for a little bit. Hopefully it won't be too disturbing.


So this is an anniversary of sorts. I am now clean 1 year. It has only happened a few times in my life but when it does I love it. I have stayed healthy enough for the last year to keep out of the hospital. Now that may not seem like much, and some people would say they go their whole lives without going in the hospital. But for me, like turning 30, it is a huge deal. Much of the reason is my wife JG who is constantly encouraging me to become better and better. And always supportive, even when she doesn't want to be, of my treatment times. Which always encroach on our time together.
In my family there were 4 of us that were born with CF. My oldest sister, myself, my younger sister, and my cousin (who was 2 months older than I.)
My oldest sister died just minutes after she was born, it was in the early 60's and they didn't really know what had happened, just that she never took a breath. They were never able to clear the airway despite continuous bulb suctioning, and even regular hospital suction.
The autopsy said that her body was full of thick sticky mucus. The intestines, the stomach, the lungs and the nose. She never had a chance.
I was born 10 years later. And my birth was so similar to my older sister's that my mother was very worried, and felt like she was re-living that time in the 60's. By the grace of God and the expert care of medical professionals, I was able to make it.
Of course there was the med student that ran the test for CF for the 10th time when it came back positive. I have always had a special appreciation for Med students since then.
When I was diagnosed they suddenly realized what my older sister had died from. And they tested all the family and extended family for CF. My cousin came back positive, though as of yet she hadn't showed any symptoms except for being unusually small. Being just 3 months different in age, and sharing a bond of CF we were obviously friends and very close.
2 years later my younger sister was born and immediately they knew she had CF, because of the meconium ileus she had at birth. So there we were, 3 kids with CF.
So right before my sister turned 4 (I was 6), the family was on a trip. My parents suddenly had to rush home with my younger sister. She had gotten a cold and was getting worse. The other 5 of us kids were driven home by a family members to grandmas.
I never saw my sister alive again. She died in the morning on her 4th birthday.
This came as quite a shock and even though I was very young I still remember it vividly. My parents had the viewing in our living room. To me it was very disturbing. My roommate was gone. I still remember just laying on my bed wondering why. Not why she had died, I knew that she had died of CF... a different more disturbing why.
Come back soon for part 2 of The Anniversary.