Saturday, February 26, 2011

Need vs. Want

Does a thought ever catch you off guard? At some point today, I am not sure if it was in the moment between sleep and awake during my mid-morning nap or when, but it suddenly struck me that life is mostly about want and very little about need. I stopped to think about what in life I need. Why do I need new lungs? Now stay with me on this, I need new lungs because my old ones are reaching their end and without them I cease to exist. That need is understood, but why do I need new ones? I don't! I want new ones, as simple as that. I thought about what I would need new lungs for and I realized that there is nothing in life that I feel I need to accomplish, or finish, or discover, or visit. I just want new lungs to enjoy life, enjoy things like watching Josie get married, or Cooper graduate college, or Grae discover her path in life, or Kai play baseball in high school, those are the things I want.

But the further I think on this I realize life is really just full of wants, realizing we need thing like water, food, and shelter is obvious but everything  beyond that is things we have created a need. We have confused need and want. We put an emphasis on vacations, money, house sizes, car, or prestige but I am not sure it really means anything. Guess it depends on your frame of reference, but life is just about the experience and when it's over, whether you believe in heaven or not all those things you did or saw don't really matter.

Now given we all are existing here on this earth and to sit in a corner doesn't do us much good, and so we each follow a path that brings us our life and how it is played out. Rich or poor, it is our life and we really have to be somewhere doing something. But in the end it won't really matter if you were the CEO from JCpenney or the maintenance man, your lives means exactly the same and all you can do is find happiness in what you have.

In the end I don't need new lungs, since I could just let nature takes its course, but I want new lungs. I want to exist here in a way I haven't as an adult. I look forward to things of the future but my life has been pretty whole to this point, I am content with whatever life brings.

God bless you and your life journey.

Friday, February 25, 2011


The sun does more than warm the earth, it makes my day a whole lot happier. I love sitting here in the dining room in the morning with the sun streaming in. If I could have one thing everyday of my life, it would be sunshine, it's a natural high.

So, as I try to put the pile of information this week neatly sorted in my brain, I will move forward with other tasks at hand. This morning I must finish the Adaptive cover for community education. Should be fun, somewhere I have to find tennis shoes for the back cover or I have to create them myself. Sometimes creating something that small is much less time consuming then finding them in the right format.

Watched Grey's Anatomy last night, missed the first few minutes but soon figured that the guy waiting to get new lungs had CF, ironic. But as any TV or movie would have it, there was a twist. The guy's girlfriend (soul mate) also had CF, and unless they broke up, the docs wouldn't give him the lungs that they had waiting for him. I guess I missed the part about them finding out she had CF also, she had Pulmozyme in her purse and of course every CFer across America said at the same time, "Why would she have Pulmozyme in her purse?" Seriously, couldn't they have just stuck with enzymes. Kind of like an inside joke I guess, but Pulmozyme needs to be refrigerated even though it can be out for 12 hours,  you still need a neb and compressor in that purse also, carrying it around is pointless. Oh, I guess the reason for the breakup was that she having CF would re-infect his lungs. After reading all my infection disease info, I can understand, but according to that same info my Christmas tree could cause me problems too...pick your battles.

Hope the sun shines for you too, wherever you may be.

Thursday, February 24, 2011

I have been very up and very down since yesterday.  I mostly felt low because of yesterdays information about PTLD EBV-associated. So, as I have continued to try and process this, I am not sure if I recalled something the doctor said, read something, or have just decided to make things up because it makes me feel better.

As adults 95% have been exposed to EBV (Epstein-Barr virus), I have not. So, I can't win the lottery but I can be in the 5% of all places that I rather not be. The reason this is not a good spot to be is because the likelihood is a donor would be in the 95% category, and after transplant having a lowered immunity the EBV would be reactivated. I should note, I will use chicken pox as an example. Once you have chicken pox you have antibodies, our immune system holds them at bay. Kinda like the guards in a prison, they keep the prisoners in line, but when the immune system has let down it's guard so the body doesn't reject the lungs, it opens the door for the EBV to rear it's head. Now if I got lungs that didn't have EBV previously and there are no antebodies, than that's great - of course it doesn't mean that I still can't be exposed to it at sometime in my life. I nearly forgot, the problem is with EBV (or mono) it will turn into Lymphoma (PTLD) if the body can't fight it.

I've spent a lot of time Googling this subject and been doing research on the CF forums with real CFers and their transplant experiences and the conclusion I have come to is two-fold. One, I am worrying about something that may or may not happen (ie. transplant/cancer). Secondly, this is something that I have absolutely no control over.  So, I can either worry about it now, or I can worry about it later, when there is more likelihood of it actually affecting me.

This doesn't mean to say that I won't feel the rollercoaster ride of thoughts and decisions for the rest of my life, or at least to transplant should it happen. I am finding that people going in for their new lungs question it till the very last minute because the whole thing is scary. One woman even said to the doctors in the operating room, "I really don't need this, I just have a little cough" even though she knew she did because she couldn't do anything anymore. Everyone has the same kind of story, and everyone has the same doubts. It really is like walking into a dark cave and hoping you don't encounter a bear along your way to the otherside. When you come out to the light you hope to God you made the right decision.

Not one, not one single person of the dozens of transplant stories (CFers) have regretted their decision. They would take what they now deal with transplanted over their CF lungs any day.

Between rollercoasters and bears in caves, looks like it will be an interesting journey.

Wednesday, February 23, 2011


Who would have known that in the quest for transplant I would have been better to have had my brother or sister lick my face and given me Mono than to keep me from it. How insane?

But since no licking was done and thus I don't have the antibodies in my body for Mono aka the Epstein Barr Virus, I am at greater risk post transplant for post transplant lymphoma.  You know that whole silly thing about being immune-suppressed post transplant. The details are too many to repeat and really I would have to re-read my literature to put it all here, but the shortened version of it all is having viral antibodies is good. So, don't be afraid for your children to get viruses, one day it might actually help. Although if your child is born with CF today, you are far better off for their future as new drugs are on the horizon.

So, does this new information shy me away from the transplant idea? For a fraction of a second, maybe less and maybe once it all gets filed properly in my brain I will have more to say, but for now I file it in with the rest of the information that requires a second look at.

I learned a lot. I learned that carpet is not good or bad (no ones ever tested it). Cats, reptiles, and birds are bad, Poodles are not! Gardening bad, painting flowers on canvas, not bad.

Lung transplants are the most difficult as they are always exposed to the elements since everything we breath or come in contact with can exposed to our lungs, where as kidneys, livers and the like are not directly exposed. On top of that if a kidney was compromised dialysis is always an option, lungs don't have that option.

I also learned hard cheeses are better than soft post-transplant and pasteurized is a must. Milk directly from a cow not a good idea (really wasn't planning to drink that warm stuff anyway, icky). Overall, good information. Guess I have to decide which things I am going to worry about. Most of it right now means nothing to me since I still have my yucky right lung and ok-ish left lung and transplant at the stage is still a really long way off. And once I heard about listing it could be a long wait or the shortest - 9 hours. Yikes.

So really other than more information to digest I still have to wait after the 7th for whether they will list me or not. Everyday seems daunting when I awake, and by the time I go to bed I appreciate having had that day but grimace a little at what the next day may bring. Having CF is hard at times because all I want to do is rest or take a nap, or be lazy and yet in order to keep going I have to exercise and keep my lungs clear and working.

Time for my vest, maybe later I can clear up some of these thoughts. Too tired right now.

Tuesday, February 22, 2011

Designing Again

Today I was able to get some work done for my job. The one thing I said I would do is the covers for the three brochures that are currently being worked on. I also realized today that when people don't do your job regularly, do your job, they might not know some things that seem common place. So what I learned from brochure one, I can inform for those doing it to fix brochures two and three. Sorry that the first one had to be a learning experience, such is life.

Today was pretty good, was rocky off and on. I did accomplish 30 minutes on the elliptical, not sure how that happened, but it did. Now the guilt from yesterday has left as I made an even bigger goal today with exercise.

Tomorrow I learn a little more about transplant, I should start adding to my list of questions. I have a few, I am mostly bewildered I think. I don't know where to rest my hope, one minute I am thinking how awesome this is all going to be and the next I am thinking how this could all just fall apart in my lap and there will be no future. I did learn today from other post transplant people that this stupid mush brain of mine is pretty normal at this point and that explains why the good Doc said I needed someone with me at these appointments.

It really will be like living two different lives in one's lifetime. There is the life with CF of gradual decline and working harder and harder with less and less. And the second life with renewed hope and the ability to do things I haven't done since I was a kid. Seriously 20 years! I remember at the age of 10 running up to the house to answer the phone and loving the feel of the speed and chance to get the phone before, in most cases, grandma would hang up. To this day, I know we didn't have an answering machine then, but why was getting the phone so important? I think it's just that internal goal setting. Maybe for old time sake I will go back to our old home and make the run, just to re-live my youth.

Maybe it's like having a child, you imagine what it will be like but when you hold that child for the first time the reality of it all hits like a lightening bolt. As a parent you are responsible for this new being and their life, in the same way I will be responsible for the new life I receive and it will be my sole responsibility to take care of the lungs with every breath I take.

I am off to think of questions for tomorrow.

Kiss your loved ones today, today is all we have.

Monday, February 21, 2011

Finally at 6:58 PM I feel half way normal, well,  normal for me.

I was at the clinic by 7:30 this morning and didn't leave until 3:00. I had 4 appointments and only one that actually required more than conversation. But my whole day's schedule was off, I was up at 5 (yuck) and couldn't get to my vest again until 3:30 and for me that is just too long. I got so cold during the Nuclear Scan that I have spent the last 4+ hours trying to warm up. Between long underwear, sweat pants, two layers on top, and to top it off a robe and slipper, and finally I am warm. But still tired.

I realized today that I have not missed a day of exercise in over 5 weeks. Today I am not going to exercise, and I will feel guilty about it until I finally exercise tomorrow. Should I feel guilty when most people haven't even looked at their exercise equipment in 5 years. But, I do. Now let's see if tomorrow I feel the effects.

I learned a little more about transplant today, mostly I learned that I could live a 'normal life' and actually be able to work an 8 hour day. I wasn't looking at full-time work as a bonus of new lungs. I was focused on going places spontaniously, traveling more, and running up the stairs (honestly).  Seriously, if you were given new lungs and could breath doing anything, would you want to spend your life in front of the computer for 8 hours a day? Actually most people already do, I am just not sure if I would have the patience. So, I will ponder on that occastionally, since there really is no use worrying about something like that when I have such a long road ahead. Don't count your chickens...

Thanks to my brother and dad for tagging along today. I think my brain is beyond overload, I can't seem to retain much and other's ears and brains are much needed through this process. I tried tonight to remember some stuff to share with my husband and our conversations went like this. Chris said, "today at work I was talking with Jon and.... I interject "Oh, Oh, I remember something let me get it out before I forget again." He says, "Yes, go ahead, that's fine." I spit out what I remember, nothing that necessarily even requires conversation, just facts, and then back we go to our original conversation. This happened more than once, the night is still young.

Todays highlight, really has to be spending time with my dad and brother. I spend time with them otherwise, but usually it is my mom that trudges through the clinic with me, God Bless her. Today it was the two guys that have been with me since day one of my life. I can't repay my family for all the good, nice, thoughtful things they have done for me over the years, months, and last few weeks. I don't know how they find the strength but I will spend the rest of my life being thankful for the time we have spent together.

Life has only one guarantee, it will end. How you enjoy it is up to you, how you treat others is up to you, how you view life is up to you, just remember it is gone in a blink. Live and love while you have the chance, but cherish every moment.

Sunday, February 20, 2011

The week begins again. Monday is the first of three days of appointments. The first three tomorrow are meeting with people and gathering information about transplant and the process, the hardest part is being there at 7:45. Now we have added another round of snow to the mix so that always adds on a little extra driving time.

I think the hardest thing right now I can think of regarding transplant is the length of time that I could wait for a set of lungs to show up for me. Everyday I wake up I take an assessment of how I feel, the mornings are the worst, I usually feel halfway normal between 3 and 5:30 pm, then it all goes down hill again. Where would I be without Ibuprofen, it makes such a difference in how my body feels. I just wake up everyday hoping I will have enough strength and willpower to push through. I am tired off this disease, I am tired of being tired.

On an up note, I got to spend time with family this weekend. My brother is painting for us, my sister-in-law is very effective at organizational education, I hope we can retain what she said to help things flow a little better around here. And of course I got to spend time with my nieces (11, 6) and nephew (2). They always bring so much joy to my life I can't put into words what it means. I try to give them all the love I can as if they were my own and hope that they know I am always there for them, no matter what.

I am going to sit here and enjoy my coffee and muffins while the snow falls out my window. It might make for bad driving, but a fresh snowfall is always beautiful.

Have a great week.

Tuesday, February 15, 2011

Today was another day at the clinic, four more tests down, too many to count left to go. I have had an up and down day, I am always thrown off when I can't start my day as I usually do with Albuterol. Most people might think of a hot shower, or fresh cup of coffee as the thing that gets them started in the morning. For me it's a mad dash out of bed to the Albuterol and strap on my vest. Not that I enjoy trying to yack up every thing out of my lungs that has been sitting there while I slept, but without my morning routine in check it makes my whole day off.

Today was my first mammogram, now I can say I understand what the 'flat as a pancake' term refers to. Seriously, how can a breast get that flat, and the position that you hang to for dear life is insane. So to all women God Bless you, I now have joined the club.

As I sat in the cafeteria area trying to enjoy my very hot Chai Latte before heading off to test three I suddenly realized how loud it was. I have always been a people watcher too, so between listening and watching I felt slightly over stimulated and finally got up to leave. I would catch snippets of conversation as people went by, one young woman was apparently very unhappy with someone. Reminded me of high school the way she was complaining. You know 'can you believe Suzie had the nerve to ask Johnny out when I just broke up with him last week' that kind of stupid conversation.  People from all walks of life, people who look confused, people who look tired, and people who walk so fast you wonder what kind of urgency they are attending too. Mostly I can say I noticed a lot of people carrying coffee or the like.

Tomorrow is blood gas and 6-minute walk, not too bad just be glad when they are over. 

Now I think I will go ride my bike to no where and watch a little TV.

Monday, February 14, 2011

Today will be the first post in what I hope to be many days ahead. I chose the quote from Kalidasa as a way to acknowledge the importance and beauty of each day. Every day is a gift.

I have started this blog as a journal of the journey I am about to begin. I suppose you could say this journey began when I was 18 months old and was diagnosed with Cystic Fibrosis. At that time life expectancy was 18 years old, today it is 37. But as we all know those are statistics and although they make us all feel better the reality is all we have is today.

My lungs of 33 years have finally had enough of the constant bacteria and junk waging a war in there and are 'tired'. Thus, I am tired too.

The journey that I am about to embark on, is the journey toward double lung transplant. It isn't for everyone, and probably the most mentally and physically taxing event of my life.

Today I began my first round of tests for transplant evaluation. Started off with 15 vials of blood, that seems pretty reasonable. Tomorrow will be day two, and no needles involved - I'll take that.

On a side note with an oxygen tube stuck to my face 24/7, I am now the person that other people stare at or feel sad for. I used to look at people like that too, well frankly, still do. Guess I look at other people and think how awful for them what they must be going through. Even though I know what I am going through I feel compassion for other people as though I have had a smooth ride my whole life. Guess I have always believed, thanks to my Dad, that there is always someone worse off. So even at one of my lowest points I realize that there are people who are struggling more than me.

May you learn to appreciate every dawn as a chance for happiness, a true gift.