Wednesday, June 30, 2010

Hospital Stay

I had my one month follow up appointment today to see how the Cipro had worked.  It kind of did...on paper.  In reality it did nothing so I was not surprised when she said she wants a clean out.  My FEV1 went up to 44%, which is awesome (from 42% last time), but I am still SOB and coughing with any exertion.  The team saw that on my 6 minute walk test as I hacked and coughed for about 70% of the time!  But I was still able to walk 1390 feet!!!  Which according to Miss Beatty is just below average!!!

I'm glad to be going in the hospital to get my lungs back under my control.  I hate coughing and wheezing.  And even Peter says I sound like crap.  So this must change.  What I was NOT prepared for was the wait to get in.  **SIGH** I must wait until next Wednesday to go in.  And unfortunately, since I don't have "proper" health insurance yet, I must stay the full 14 days in-patient.  No home IVs are covered with the bridge coverage I have.  Waiting until August was not an option at all, and I agree with her.  I need to feel better and have more energy before the summer is over.  

I am just so so so very upset that I will be missing K&B's wedding!  I have known B since I was 15.  I consider him one of my closest guy friends.  We used to talk and chat all the time at work, and about anything and everything.  When he started dating K I was so excited!  And then when he proposed I was ecstatic!!!  I have been looking forward to this for almost a year.  And I have been looking forward to actually attending the reception for about 3 months.  I know with CF one must not plan ahead too far, nor be surprised when the plans are fouled up.  But I am still rightfully bummed.  I am going to email the coordinator and see if we can wait another week and a half to get me in.  I mean what is 12 days when I am waiting 8 already!  

Now on to a bit of a rambling vent post:

Everyone always seems to think that going in the hospital is a bad thing.  I personally like them.  The stay itself is not the most pleasant experience, but the end result is something that I look forward to.

What is the end result you ask?

Feeling normal and halfway like a "healthy" person.

Sounds so simple yet it is why I like going inpatient.

When I go in I try to remember that not everyone I know has the same mindset as me.  Some people look at this as I am getting sicker and sicker and need to be inpatient in order to feel better (which is true but why dwell on the negative of it).  Some feel that hospitals are horrid places and no one should have to be in them.  But no one seems to be OK with me going in, except me, and my doctor.

I would like to attempt to change the mindset of these people.  Instead of looking at it as yet another hospital stay where I will be infused with IV antibiotics in order to rid my lungs of this PA flareup, I implore my family, friends and readers to look at it as a way for me to be myself.  That's right, be myself.  Because after the 14 days of IVs are up I can clean without coughing fits, I can talk without coughing fits, I can even goof around without coughing fits.  And I will have energy, cough less, and all around feel better.  I ask my family, friends and readers to not worry about these hospital stays until I stop having the desired end result when I am finished.  If 14 days of IVs does not put me where I want to be then I say you can worry.  Until then, I ask you to be glad I am going to feel better.

Don't fret that I am couped up in a room for over a week.  Don't fret that I don't have visitor's all the time.  Don't fret that I might actually like the time alone.  Don't fret that I am a small helpless child and need to be pawned over and coddled.  

Monday, June 28, 2010

Summer Time

Today officially starts the summer for Peter's daughter and I.  She is doing VBS this week in the mornings and then she will be with me or her nana afterwards.

This summer will be a test for me.  For both my CF and my sanity lol.  I will have to think of fun things to do with an 8 year old that won't break the bank.  The park of course is top on my list and playdates with some of her friends too.

I'll have to relearn my treatment schedule, and functioning on less sleep than I am used to.  There will be a few weeks where she goes with her nana so I can catch up on a lot then.

Wednesday is my clinic appointment and getting a round of IVs is definitely a good idea.  It will keep me healthy all summer so I don't lose a lot of ground from lack of sleep.  Plus, it will help me run around and chase after her!!!

Friday, June 25, 2010

Breathe and Rest Conner


Please keep Conner's family in your prayers and thoughts.  He was 7 years old and passed away last night from CF.  No 7 year old child should lose their childhood to CF.

Many are painting facebook red in honor of him.  If you have a FB page, please add a picture of something red as your profile picture so we can raise more awareness for CF.

And remember, life is precious, hug everyone you love, and even those you only like :)

Monday, June 21, 2010

Mini-vaca time for me, and some other things

I am heading down to good old PA for a few days.  I need to see my niece and nephew and of course my Mom, Dad and the rest of my family and friends.

I am not going to go into much detail here but if any of you are praying people, can you say a prayer for my Step-mom?  She needs prayers as does my dad.  Thanks!

Next Wednesday is my clinic appointment and I know this time she will not let me leave without accepting to go inpatient.  And I am fine with that.  Cipro has done nothing for me, unfortunately.  And being sick week before last just set me back some more.  Especially in the weight department.  I have lost a total of 4-5 pounds now in 2 weeks.  Not good at all.  So I will see if she will be kind enough to let me stay home for 4th of July weekend and then that Monday head in for my stay.  I hope so!  I want to see fireworks from some other place than my hospital room!

Wednesday, June 16, 2010

Interview Time!

Wish me luck!

Friday I have my SSA interview finally!!!!

I am nervous and excited.  She wants to get my case through ASAP since I was denied at first and she has all my paperwork from my doctor's and lawyer sitting there.  So that to me is a great sign :)

I will be sure to let you all know how it goes!

And BTW, Piper is doing awesome!

Saturday, June 12, 2010

Piper's Lungs!!!

Prayers are out for my Cyster Piper!

She went into surgery around 3:30 this morning and is expected to be out around noon time (Eastern Time USA).

I'm so excited I could cry :)

Thursday, June 10, 2010

I'm sick

And I don't mean normal CF sick, I mean virus, fever, on the verge of throwing up sick.

Right now I can't sleep since I slept till 12:30 and I don't want to watch TV, so I figured why not blog from my phone.

It started last night. I just felt off, but not the way I have been feeling since I started the Cipro, it was a different off. Then all through the night I was having weird dreams and one I even got sick and I woke up in a panic thinking I had vomited in bed. Luckily all I did was drool a whole bunch (man I'm sexy haha). And it is just getting worse as the day progresses. I now have a fever of about 100, which no isn't bad but I spike fevers at night so I can only imagine what it will hit tonight. I'm not going to take any Motrin until I need to because I don't need to mess up my liver/kidneys more than they are already.

What made me want to blog was not to tell you all I am sick, but to ponder some things. What do you do when one person in your relationship is sick and the other isn't? I've never lived with a man before, at least not sharing a bed-wise so I'm not sure protocol. Do I sleep on the sofa since he is the bread winner? Do we continue to share the bed since he has a great immune system? Obviously I'll ask him when he gets home but for now I just lay here thinking.

If I don't feel better by tomorrow I'll be sending him off to NH with the kids without me. We have had this planned for a while and have had to postpone it a few times already. I don't want them to miss it again just because of me.
Sent from my Verizon Wireless BlackBerry

Wednesday, June 2, 2010

O2 stats in the toilet!

As my doctor has told me to yesterday, I started monitoring my O2 throughout the day.  I used to be really good at this but I have slacked off int he past few months.  So today I hung my oximeter around my neck and got to work...on cleaning, laundry and food shopping.

Cleaning - not bad, never dropped below 91%.  Granted I did it all immediately after my morning treatment.

Laundry - right along there with cleaning.  I still have some clothes in the dryer I need to fold, but my back ache is more troublesome right now than the lungs.  I just did my nightly treatment.

Food shopping - of course the public chore is the one where I dipped below 90% and stayed there.  I averaged around 87% the whole trip, dipping down to 81% when loading the bags into the car.  I didn't even check after carrying them in the house...I was too nervous.

She told me if I get below 90% with ANY physical exertion I need to wear my O2.  Does this mean I need to lug my O2 with me to the food store?  I will have to go in public with tubing on my face?  My CF won't be hidden anymore?  I will be able to park in handicap and NOT look like I am lying?

As I sat in my car after loading it up with bags and trying to catch my breath, I thought of what she had told me, and then I thought that I will have to wear my O2.  And then, the tears came.  Just a few, nothing hysterical, but they came.  I'm 29, I don't want to wear the O2 in public and shout to the world that I have a horrible lung disease and it is kicking my ass.

Call me wussy, call me a baby, but I don't wanna!!!!!!!!!!

Tuesday, June 1, 2010

Clinic appointment

Well today was the day.  All went fairly well, about what I had expected.  I am free from lock up for 4 weeks, but will most likely get thrown in beginning of July.  Dr D agreed to a 2 week course of oral Cipro to see if that brings me back to base.  I was 36% FEV1 when I went in which was down from 42% three months ago.  They had me do an albuterol treatment and I was back up to 43%.  That's a 19% increase in capacity after 2 minutes of albuterol and 15 minutes waiting for it to spread.  Which means after 3 hours with no treatment I dropped that much.  It's craziness!!!  With all of my other symptoms being stagnate where there are, Cipro is a decent option. I usually respond fairly well to it, so **fingers crossed**.

She said if I am not feeling totally fabulous when I come back then she wants to do a clean out.  Especially since it has been almost a year since I had my last round - October.  The shortness of breath and increased cough/sputum production warrants a clean out, and a strong one if Cipro fails me.  If I do have to go in that is fine, as long as I am out by July 17th for a friend's wedding in PA.  I will not miss it!  I don't care if I am on IVs still but I will be there!!!

For the rest of the visit: my blood pressure was a little off.  I was 133/73 which is different for me.  I am usually 110/90 ish.  My O2 was 92-93% which is fairly normal.  She told me to make sure I check my O2 throughout the day and if I see it below 90% at any time I need to put the O2 on.  She doesn't want me to mess up my heart.  Understandable for sure!  I also had a chest xray done.  That was an experience!  I am used to waiting in the waiting area to be called but at Brigham's they take the CFers right into a changing room and then into the xrays.  It was awesome I didn't have to wait more than 10 minutes!!  And that waiting room was PACKED.  I told her about the lactose intolerance and she said I can have a test done to prove I am but considering I feel much better since I have cut out lactose there is a good chance I really am and no need to have it done unless I want it.  Works for me!!!!

I am still getting used to my new clinic.  It is a total 180 degree change from Presby.  Children's hospital versus adult.  Female doctor versus male doctor.  Everything is brought into your room versus having pfts and vitals done in different rooms.  Taken right to a room versus waiting in a waiting room.  It is all so strange and new to me.  Luckily I felt much more comfortable with Dr D this time.  I think we bth were feeding off each other in being nervous seeing a new doctor and she feeding from my hesitations etc.  I really liked her this time and am glad I chose to come to Children's.  Once I have been there for a while I am sure my hesitations and awkwardness will fall away.  Its very strange switching doctors after 25 years.

So all in all not a bad day.  I avoided being thrown in for now and although I have to avoid the sun for 2 weeks, at least I can still enjoy the sun from under my big floppy hat and lightweight clothing!