Tuesday, March 26, 2013

Study Disqualification and More

Clinic went well today.  For the first time in a few years I am not trying an oral antibiotic on the first appointment after a round of IVs.  I feel OK, not fabulous, but not bad, and since my numbers are roughly where they were last time (post bronchodilator) I can wait and see her again in 2 months.  If I make it that long I will be ecstatic.

Since I had to meet with my professor this morning at 10 am and clinic was at 12:30, I knew I would be in need of a treatment.  My numbers reflected this.  I blew at my highest at 1.01L, 35%.  Last clinic I was 1.16L, 40%.  But I was trying to get into a Pulmozyme study so I asked if I could have an albuterol neb and try again.  We did!  I hit 1.15L, 40%....but it was not good enough.  The calculations they use for the study had me at 37.5%.  Sad :(  This is the first time I have ever been disqualified from a study based on FEV1 being too low. I am not happy about that.  What can you do though right?

Holding steady I am.  I registered for classes yesterday and my summer will be BUSY.  3 classes, one is a 12 week class, one is a six week class, overlapping the last six weeks of the first and the third class is a full week institute that will take place simultaneously with the other two classes.  So the third week of July I will have 3 classes!  My week is going to be hectic!  Monday I will be at school from 8:30-4:30, then Tuesday, Wednesday and Thursday I will be there from 8:30am-9:30pm and Friday again from 8:30-4:30.  Can we say fevers and sleep that weekend?  I don't care though.  I need to finish by December and to do so I need to take three classes this summer and two this fall.  Plus this will test me out on something I am thinking about...

Going back to work.

I have been working out at the gym five days a week doing cardio, but will be adding strength training in shortly.  Sunday's I take a Yoga class too.  My goal is to work my butt off (literally as well as figuratively), and see if I can get my heath more stable and get it up.  If I can get to 45% and stay off of IVs for 6 months, then I will seriously consider working again.  P is not excited about it, but he said he will support me....but only if it won't make me sicker faster.  I agree with him.  I don't want to go back to work and in three months have to stop again and be listed for transplant.  But I have nine months to think about it, weigh my options and decide if it could work.

Wednesday, March 20, 2013

Port Flushes

I finally did it!  Finally, like its been years or something HA!

I accessed and flushed my own port, all by myself!  P was there for moral and comical support.  He recorded the whole thing on my iPad in case I passed out so we could watch it later.  No worries, he would have helped me up off the floor....after he finished laughing of course.  That man loves me, and I him!

The fact that I did not pass out, did not vomit and was not squeamish at all is astounding!  I did stall for a few minutes before poking myself, but that was it.  Being able to do this on my own will save me a bunch of money and time in the long run.  Doubtful I will access myself mid-IVs but de-accessing on days the nurse is coming to change my dressing will be a necessity!

Tuesday, March 12, 2013

My Foreign Cities: A Memoir

Upon finishing the advanced copy, I was told by the publisher that I could write up a review and post it on my blog if I wanted to.  So here goes nothing!!!

My Foreign Cities Facebook Page

Amazon page

This is the first book based on CF that I have read.  There are a couple others out there, one of which I own, but I just have not gotten around to reading them yet.  Maybe it was the "pressure" from the publisher, or the shortness of the book that made me want to get right to reading it.  But whatever it was, I grabbed the book and didn't let go until it was finished (figuratively - it was my companion at the gym all week long).

Right from the start I was pulled in to the story.  Having CF I have a slight advantage over the average reader.  I was curious what Stephen's life was like.  Was he healthy growing up?  How did he and Liz meet? Did he get a transplant and was it successful?  Was he still alive?  All these questions were answered as I read along, getting to know Stephen and Liz and their life together.  I could commiserate with him and his hospital stays.  I could taste the meds as he inhaled them.  I could chuckle at the tackle box pill sorter.  I knew what all these things felt like, personally.  And its very reassuring to read about it in print and not just online.

The memoir is written by Liz, about her and Stephen's life as they lived with CF and the double lung transplant.  It gives a great perspective from the spouse's point of view, something that we as CFers will never understand.  After reading the memoir, I can better understand what P feels and goes through though.  Circumstances are different of course, but the fears, the hopes, the anxiety's and the sadness are all the same.    I have asked P to read it.  I know he will....in time.

NY Times states that this memoir is a modern day love story.  I agree.  The story begins with Liz and Stephen as just friends in school, then it slowly winds its way to love.  Their life is built up in front of your eyes, reeling you in and making you crave more.  I could feel the love, and the tenderness grow with each page I read.  The awkwardness of new love.  The questions of whether or not loving a CFer is a good idea.  Knowing you have no say in it - its all up to your heart.  I could feel my tummy tighten with anticipation as Stephen got the call.  I swallowed a few tears as Stephen had some setbacks.  I smiled as Liz talked about life now.

I don't want to give anything away, I want you all to read it when it hits shelves on April 8th.  You are welcome to pre-order online or with your local bookstore if you wish.  I highly recommend this book to anyone who lives with CF, knows someone who does, or who just wants to read a sweet story about two people who live as much as they can in the amount of time they have together.  

Monday, March 11, 2013

Death Wrapped in a Blanket Fort

The death of friends with CF open up many doors.  There are the floodgates of tears when you lose a friend.  There are the floodgates of emotions for someone who died from your disease.  But there are also the doors with a bunch of unanswered questions behind them.  And you find yourself asking these questions on a blog at 1am (then modifying them in the morning).

Did they know they were dying?
Did they know they were being taken off of life support?
When they were told they needed to be vented were they scared and worried they wouldn't come off of it?
What was the end like for them?
Did they know it was there?
Did they hear people talking, know people were near them?
Did they have any regrets?

You ask these questions because their death is your death.  You see their end as your end.  And though it may not happen for a few years, it still looms large over your head. Wanting answers to something you can never ask.  Wondering how it will be for you.  If their death really will be your death.  And always, always wondering if you lived enough, loved enough, and left enough impressions that when you do die, you won't be forgotten easily.

For me I wonder if my new life is a true representation of me.  Do the people in my life know me?  Do I know me?  Will they say "oh she was x, y and z" and be right?  Or will my "original" friends say "no she was like a, b and c" and will they be right?

Death makes you look at your life in an entirely different light.  And though I have been fortunate enough to not lose someone since January, someone out there, on my friends list, may not be there tomorrow.  And each post about sickness, or more IVs, or the need for O2 continuously, reminds me of this.

I love each and every one of my friends, but some days, that blanket fort on the bed calls my name more ferociously than the previous day and it takes all my strength to not go and hide...

Sunday, March 10, 2013

Prevacid Duh

All week I have had horrible heartburn.  I have been eating Tums like they are candy.  At first I attributed it to my diet that I started Monday.  At the GI on Thursday I didn't mention it because I figured I would take 2 Prevacid in the am and see how I was by the evening.  I completely forgot about it.  Then yesterday it dawned on me....I ran to my pill container and what did I see??  NO PREVACID!  I had forgotten to put them in on Sunday with the week's pills!  Well duh!  So starting tonight my Prevacid will me back in my system!!!

(my anal OCD self did not allow me to take some yesterday.  My bottles hold one week's worth and I can't stand it when they don't line up lol.  So yes I suffered one more day...)

Thursday, March 7, 2013

MRCP Results

Today was my follow up appointment for the MRCP I had back in January.  Good news is the cyst either shrunk or was miscalculated from the endoscopic ultrasound.  It is only about 1.5 cm up from 1.2 cm the time before (the endo ultrasound showed it at 2.2 cm).  Unfortunately, I need to have another MRCP early April so we can be sure.  And then in the same month, I need to meet with a pancreatic surgeon to go over my options - if I need surgery to remove it, if we can just follow it, or if we can virtually ignore it.  Hopefully we can just monitor it for now.