Thursday, July 29, 2010

Clinic Appointment

I had my follow up clinic appointment yesterday along with a bone density scan.  The results came back normal for the scan.  Guess all that calcium I take paid off!! I go to clinic again next Tuesday and then we will discuss when the PICC can come out.

Clinic itself went well.  My PFTs were up to 46% or 1.33L.  Which, I found out yesterday is kinda false.  How you ask?  Well.....I noticed that the actual level for FEV1 is 2.96L at Children's and Penn used 3.12L.  So, my 46% is really 43% by the standards I am used to.  It also means that when I was at 38% a few weeks ago I was really at 34%.  Luckily SSA uses Liters and not percentages to determine disability.

Here are some sites I found about lung functions.  I am trying to see what is considered "normal" L for someone my size.  Age, height and gender are the main factors and none of these has changed since moving from Penn to Children's.  I'm also going to email my old study coordinator at CHOP and see what she says about it all.


One thing I noticed and think it may be from the IVs are my joints hurt like hell!  This is the first time this has happened to me.  My knees and hands ache and its hard to do much with achy elbows and shoulders.

Other than that, things seem to be going well.  I got all my prescriptions written out so I can get them all re-filled finally and take everything I am supposed to.  My weight is the same thankfully and all my bloodwork came back fine too.  I am coughing slightly less, however, it is a dry cough and not mucus filled like it was before.  My SOB has decreased some too.  Looks like this tune up worked well.  Only a week and a half left on IVs and I will be done, hopefully until the winter.

Tuesday, July 27, 2010

CG getting new lungs!!

OMG finally!!!!  My friend CG is getting new lungs!  Please pray that these are a definite go and that she will wake up tomorrow and be new lunged out woot!!!!!

Cystic Gal

Sunday, July 25, 2010

Drug Addict?

Here is something for you to ponder....Are we Cystics drug addicts?

Think about it.  

We can not function without our drugs.  We scrounge around the house for some extra cash so we can get our "fix".  We go through "withdraw" if we skip doses.  Without our meds, we could, and most likely will, die.  We have no choice and must take the drugs.

A drug addict needs their drug of choice to function.  They will do whatever they can do get money for the next fix.  They go through withdraw if they stop taking their drug of choice.  Withdraw can be so severe it leads to death.  They have become victims to the high and addiction.  

The only differences really between us and them is that we have no choice in the matter and can not stop without severe consequences, while they took the first hit and were hooked, and can, with help, beat the addiction and get clean.  

Something to think about huh?

written as fun and was not meant to portray actual drug addictions as inconsequential.

Wednesday, July 21, 2010

Am I only Dreaming.....

No this isn't a Bangles song. Its just me blogging about CF. Which, in a way, could be considered an eternal flame. However, that's not the point of this blog today.

Today I'm talking about the feeling of being in a dream at times. When you are having an "out of body experience" and feel like its not you with the CF. Confused yet? Stayed tuned, it only gets better, or worse, or more confusing depending

As I was being wheeled to the xray lab yesterday, a familiar thought passed through my mind. Is this really me? Am I really the one in a wheelchair, blanket over my lap, PICC in one arm, IV in the other and a mask over my face? Or am I imagining it all? Is this all just a dream, or a chapter in a book? Does my imagination really work THAT well?

Of course we all know the answers to those questions. YES this is me. And while I might have a great imagination, I don't think it is THAT great.

How do I come to these strange feelings you may ask? Well I am a huge reader. I always have a book I am reading and sometimes even two if I am slowly making my way through one I'm unsure of. Getting lost in the chapters, pages and words is one of my favorite past times. I have fallen in love with characters (no really, I fell in love with a man in a book I read once and even cried when the book was over because I didn't want to leave him - consider me crazy yet?), hated characters to the core, and felt pity on others. To me, reading is a way to get away from reality, and it works. So its safe to say we can see why I feel like I am in a book, reading about someone else's life, not my own.

Later on, as I lie there on my hospital bed, being beaten up by the respitory therapist du jour, the feelings come back. Its all so familiar, yet so distant. I know I've been there before, yet I don't know why. Unsure of how I got there, I succumb to the poundings and let the feelings of dreaming take over me.

Perhaps one day I'll escape dream land and find myself in reality, where I belong, and without CF. Or I might just stay in this land where my friends reside and I can think of escaping to "reality".

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Tuesday, July 20, 2010

Hospital 101

Not really anything to update on as of yet.  They are starting the discharge process to find a home care company and IV company.  My health care requires them to be separate companies.  Talk is that I will go home on Friday.

They are checking my blood sugars while I am in for a few days.  I also had my A1C checked with my blood work and it came back 91.  Last night, 6 hours after eating my BS was 91.  I had not had any IVs yet and hadn't even had my IV line placed yet.  This morning, 12 hours after dinner it was 121.  I had 2 IV Ceftaz already.  Both times they said it was good.  I guess I believe them though 121 seems kind of high.  But after checking with WedMD, seems 121 is high normal so I am golden.  I still bounce between 80-121 so I guess we are good so far.

Last night I had to drink Potassium powder in cranberry juice.  My level is normal, but on the low side so they wanted to bump me up.  That was some nasty stuff!!  It was salty and sour from the powder and kind of sweet and sour from the juice.  A totally wretched combination.  Although it was better than the GoLytely of the last admission.  I still hope that I am free of that nastiness this evening.

I moved on to my second IV, as I patiently awaited my PICC placement.  One of these days I will give in and just get a port.  But I have yet to want to cross that line.  Of course, if my PICCs start going askew I will be forced to get the port, and will like it!  And of course I think I junxed myself with this PICC.  It is much more painful then it usually is and I can't lift my arm above my head without feeling like I am cutting off the blood flow.  Also, a new development, is the IV likes to beep when I cough hard.  Occlusion on patient end haha!  I just hit the restart button and voila!  But how annoying is that going to be at 4 am with my next antibiotic!  If nothing changes by tomorrow I will be saying something.  I don't need 2 weeks at home with a shitty PICC line.

Emotionally my first night in patient always gets to me.  I get sad and depressed and lonely.  I don't want to talk to people per say, but I don't want to be alone either.  So usually I just fiddle around on facebook and pretend I am at home.  I talked to Peter a little bit too and that helped.  He is coming to see me tonight and I can't wait.  I miss him so much!  I go away for days at a time when I visit my family but this is so much different.  I don't have anything keeping my attention and occupying my time like in PA.  So seeing him tonight will help my spirits bounce back.  Plus, as I had stated in a previous blog, I hate when people act all "oh I'm so sorry blah blah blah" when I go inpatient.  And they feel they need to talk to you and that you magically want to talk to them all of a sudden.  So that annoys me (and no my fellow CFers and blog readers I do not mean you!  Texts are perfectly fine with me, its when they insist on calling a bunch).

Monday, July 19, 2010

Day 1 of admission

I apologize for my lack of posts lately.  Between driving down for the funeral, then coming back home, then driving back down this past weekend for my friend's wedding, and packing for it all, plus the admission today, I have had no time.  But now I am back on and will be updating the whole week I am in patient.

So far things are going well.  It is so much different here than at Penn Presby!  Food is better, TV is better and free, phone is free.  There are some on demand movies I can watch.  And they have wireless internet access!

I am scheduled for my PICC placement tomorrow and x-ray.  Other than that, nothing to really update.  This should be a short 3-5 day admission which I am thrilled about, then I can go home to my boyfriend.  I miss him already!  He is coming to see me tomorrow night which is awesome.

Saturday, July 10, 2010

She Passed

Well I didn't leave this morning to go see my step mom and it turned out to be a good thing.  She passed away early afternoon.  Even if I had left by 7am I wouldn't have made it in time.

She will be missed by all of us.  I feel horrible for my dad.  I can't imagine what he must be going through.  I know he is relieved she is no longer suffering, but to come home to an empty house and know that she will never ever come home....That has got to hurt.

She is now up in heaven with her grand daughter Ashley, who died 2 years ago in an accident.  I know Ashley is looking forward to showing her grandmother around "town".

Please, pray for my family as they embark on this week of mourning and preparations.  I will be heading down when I know the details of the arrangements.

Thursday, July 8, 2010

Saying goodbye to my Step-Mom

Well I guess now it is safe to explain why I was asking for prayers for my Step mom.  She has brain, liver, lymph node and breast cancer.  I was informed today that she only has a few days left.  She was admitted to the hospital a few weeks ago and was continuing treatments.  As of today she is stopping all treatments and is just on meds to keep her pain free.  She is totally out of it and doesn't know that anyone is there or where she is.

When I first found out about the brain cancer (most recent) I was kind of blah.  I knew that eventually the cancer would kill her.  But I am the type that unless you tell me so and so has 2 days I won't be upset by it.  Call me mean and cold hearted, I don't care.  It's just how I roll.  So today hearing the news has brought on the water works.  I didn't get to see her last time I was home because she didn't want to see anyone.  So the last time I saw her was in April when Peter and Emily met her.

I want to drive down for a day or two to see everyone, my dad and step family, but I don't know.  She is out of it so she won't know I am there, even though I would like to say good bye.  I just don't know what to do.  The wedding is next weekend so I would have to come back up here to get Peter for that and the funeral.  I have no problem with that at all.  Just don't know if I should.

So again I am asking for prayers, but this time, pray for a painless and easy passing.

Thank You

Monday, July 5, 2010


it was such a fabulous 4th of July!!!!  

me and the sexy boyfriend <3

Thursday, July 1, 2010

Awesome News!!!!

I have the BEST. DOCTOR. EVER!!!!!!!!!!!!!!!!!!!!

That's right!!!  I loved my Dr. H from Penn, and no one can replace him, but Dr D is moving up on my list! :)

I get to go to the wedding!!!

Yep, she is letting me postpone my hospital stay until July 19th so I can go to Philly for the wedding.  She told me to make sure I have my O2 with me and if I fly to wear it on the plane.  But since we are driving I will be fine.  And she also said that if I feel worse or my O2 stats drop while at rest to call in and I need to be admitted then.

But right now I am on cloud nine and nothing is going to bring me down!

Now to book my hotel room for Peter and I and get him a suit!