Friday, December 31, 2010

2010 Comes to an End

What a year!

Looking back on the past 365 days really amazes me.  I do it every new year's, as do most people I am sure.  But I think this one has the most changes.  I'm now officially living in Boston with the love of my life, I have a new family, I'm a surrogate mom, I've made new friends up here, I've started the Grad school process, I've been approved for SSDI, I met so many new CFers, I managed to make 2 full holiday meals (for the first time! Christmas and Easter), I spent my first Christmas away from my family, and I am finally content in my life.

I think that is one heck of a year.

Many lessons were learned as well, both new and old.  Life is short, we need to live it to the fullest each day.  Friends and family are way more important than anything else.  And only you can make yourself truly happy.

This year has been an amazing one.  Filled with love, laughter, sadness and joy.  It definitely had its down, and we lost way too many friends along the way.  But overall it was great.

Everyone has resolutions, I usually do too, but this year I think I will pass.  Nothing like setting yourself up for disappointment from day one!  So instead I vow to make my 2011 as wonderful as I can, despite the hospitalizations, the sickness, the breathlessness and the worries.  I will make it a year to remember, as each year should be.  I hope you all will do the same!

Be safe and Happy New Year!!!

Tuesday, December 28, 2010

Merry Christmas!

Christmas has been one hectic holiday this year!  I offered up our home to host dinner and while it was an awesome meal and great having everyone here, it took its toll on me!

Sunday I started running a fever.  101.1 which is pretty high even for me and my night time fevers I get.  I didn't take anything so I could see if it would wear off over night.  While it didn't disappear, it at least came down to 99.1.  However, after being awake for almost an hour it rose to 99.5 so I took some Motrin.  That kept it down till early evening when it started creeping up again.  I took more and I have been fever free since.  The only time I felt bad was when I had the 101.1 fever.  I felt crappy for about 2 hours before the thermometer even showed it.  It kept reading between 98.0 and 98.5 and I kept swearing I had a temp.  See, I knew what was up!

Emily and I were supposed to leave for PA yesterday too.  At first I was very disappointed on Sunday when I heard there was a blizzard coming and the chances of leaving Monday morning were going to be zilch.  It ruined my morning and part of the early afternoon.  But looking back, maybe something/one knew about those fevers coming and decided the only thing keeping me home to rest would be an act of Mother Nature.  We all know, fevers don't keep me down!  I would have left and possibly made myself worse.  So this blizzard was a blessing.  Instead we are leaving in about an hour.  Our bags are packed and once I shower I can pack the van and we can be on our way.  I'm looking forward to spending a few days with my family and seeing everyone.  Plus I can't wait to give out gifts!  We will be home late Thursday night, just in time for New Year's Eve with my honey.

Here are some pictures to see of our hectic holiday:

Wednesday, December 22, 2010

Do you still love me?

I know I know!

I am a horrible blogger!!!

With the holidays approaching I have been super busy shopping, crocheting and preparing for my first family Christmas dinner at our house.

Nothing to report which can be a good thing.  I have started the admissions process for grad school!  I hope to start this upcoming summer.  If I can find my GRE scores all will be OK with the world.

Well I hope everyone has a very Merry Christmas and a Happy New Year.  And to those who don't celebrate, I hope you have a happy Holidays :)

Peace on earth...good will towards men...and be an organ donor!

Wednesday, December 8, 2010

Really Effin Frustrated

I had my clinic appointment again yesterday and I left feeling really frustrated and annoyed.  I felt like nothing was accomplished.  My PICC line was pulled and I got some information about a study I am going to do, but other than that, it was almost pointless.

There were a few good points and I should explain those first before I begin my tirade on everything else.  My lung function is back up almost to baseline.  I blew 1.31L, 45%.  My highest is still only 1.45L so I am not too far behind.  That was also a fluke in my opinion, as most of my numbers range from 1.30L - 1.35L.  So technically I am baseline.  Because of my numbers being back to normal, they pulled my PICC.  I am looking forward to my first PICC free shower in a little while!  I am also no longer culturing Steno Malt.  My last one was free of that, though I did culture Class B strep.  And the one before that I cultured Aspergillus (spelling??).  Both along with my normal PA.

Now for all the annoying, why I am so frustrated things.

First was the results of my sleep study.  I didn't de-sat below 89%.  This means that my insurance will most likely refuse to pay for my O2 concentrator.  She said that I could probably use 1L at night and it wouldn't hurt me, but the chances of insurance allowing me to keep it are slim.  Even though I qualify for O2 with exercise, needing 2L.  She also said that when I am feeling run down and sick I will definitely need O2 with sleep.  Great, thanks, this is why I didn't want to do the study while on IVs and HEALTHY!  Now I will have to fight my O2 company and insurance to have them pay for the concentrator.  Just another headache that could have been avoided.  I have been using O2 for over 2 years now and I sleep like shit when I don't use it.   My blood gasses are all normal so I don't see an issue of using it.

My second cause for annoyance is that I am STILL running night time fevers. Now I know a little higher temperature at night can be normal.  But I don't see how 99.6 and 99.8 are normal.  IT'S NOT NORMAL FOR ME!  I run low, always have.  Even at night I would be around 97-98 tops.  So to jump 2 degrees just isn't right.  Maybe I am over reacting I don't know, but I want an answer and she didn't seem to have one.  Her response - OK.

My third and final issue is this wretched pain I am having across my chest.  Sometimes it is centered directly on my sternum and shoots outward when I inhale.  Other times it will go deep into my chest until it feels like it is going to shoot out my back.  The pain was so bad on Monday night I was almost in tears when I went to bed.  Motrin is helping it thankfully.  When I asked about it she asked if I was doing any push-ups or heavy lifting.  I said definitely not with a PICC in.  I mentioned being out in the cold and walking a little bit and she replied, "hmmm maybe".  Gee thanks.

I left totally annoyed, totally frustrated and wanting nothing more than to see Dr. H. again.  He knows me, he knows what is normal for me, he knows that this all would warrant some type of response other than "OK".  For this reason I am considering setting up an appointment while I am in Philly between Christmas and New Year's.  I'll have to pay out of pocket for it, but I don't mind.  I want to see him and get his opinion.

I know I need to be more assertive and demand answers but that has never been me.  I hate rocking the boat.    However, if I don't start I might not like what I have to deal with.

Thursday, December 2, 2010

Clinic Appointment and Sleep Study

Last night I had my overnight Oximetry study done.  We want to make sure I am getting the right amount of O2 at night.  Of course we had to do it during the course of IVs so my lungs are at their best.  But the few times I woke up I was around 88-90% so I am sure I dipped lower while sleeping.  I woke up totally exhausted, but with no headache luckily.  That is also a "good" sign to me.  The funniest thing happened too, when Peter's alarm went off.  It startled me, just like it does every morning, and my HR jumped way up!  Kinda funny to see it actually happen while also feeling it.  Made me giggle.

Clinic was OK.  My numbers have pretty much stayed the same.  I was 1.11L two weeks ago and today I was 1.16L.  I went from 38% to 39%.  Most of this could be from having the tests at 1:30pm versus the mornings when I usually do.  Tuesday is my next appointment where my PICC will be pulled so I am sure I will be back in the low 40s.  And if not then, well, I don't know.

The NP also gave me the number for an ENT (Ear Nose and Throat doctor) so I can have my sinuses checked out. I might not think they are bad but the bugs that are up there can drip into my lungs and keep causing issues.  As much as I DO NOT want sinus surgery, I will get it if the doctor feels I need it and if it will make me eligible for transplant at some point.  Which was mentioned, that if/when I decide to be evaluated, I will have to have them checked and possibly worked on then.  Better to have it done now while I am still relatively healthy.

Once I get my sleep study results back I will post them, and also I need to remember to ask about my culture on Tuesday.  I forgot today.