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.