Sunday, November 28, 2010

The need to exercise

I posted on CF2Chat a couple days ago about my absolute distaste for exercising. And also asking what others tell their doctors about what they do for exercise, if they are like me.

I'm not a couch potato by any means. Yes some days I don't do much but sit on the sofa watching TV and crocheting, but really I'm making money while doing that lol. I clean at least once sometimes twice a week. Laundry is two days a week. Food shopping at least once a week. This is at least 3 days of exercise, if not in the traditional sense. Then of course there is sex. Might not be the full 25+ minutes of a high heart rate exercise that is recommended, but it certainly gets ya going!

As we were all bouncing stories and ideas around, a good point was made. I need to find something I LOVE to do that is exercise. But what? Well the only exercise based activity I love (besides sex) is horseback riding. However, I haven't done it since I was a junior in high school - 12+ years ago. I was a show jumper. I've got ribbons galore and riding gear that sits lonely in a tote (gave my trunk to a non-profit riding facility for the disabled - love Craigslist!). My lung functions are lower than they were then and so is my tolerance for just about everything. I'm talking 4 hours of sleep sustained me for a day easily back then.

So how to I get myself ready to tackle those jumps again?

First I need to accept (and this is the hardest by far) that I might not be able to get to that point nearly as quickly as I did when I was 16. That I might have to start out walking for the first 5 sessions to build up both my lungs and my leg muscles.

Second I need to start some basic training. I don't mean going to the gym for hours a day, but maybe just a walk around the complex. I walk to the mailbox a couple times a week so maybe I should start taking the long way.

And third I need to find a facility that offers lessons during the day and is fairly close by. And preferably decently priced.

Luckily we are approaching winter. For me, the cold is very harsh on my lungs and unless the facility has a heated indoor ring, I'm out till at least April. But that gives me 4 months to work on my muscle toning and stamina. Someone mentioned the YMCA as a good place to start. Usually programs are cheap and maybe they will even have some day time pool classes I can take.

I need to treat myself like a child...offer a reward for a job well done. Perhaps a new shirt for 2 weeks of exercising. Or a new book. Something that will give me a reason to get there besides just the possibility of riding again one day. Being able to get back on a horse is a post-transplant goal of mine. But why can't I make it a pre-transplant one instead?

Me in Culpepper VA when I was 15

Saturday, November 27, 2010

Rocking my new CG tee shirt!

My bloggy friend CG came to visit me in the hospital (as I wrote about before) and brought me this awesome tee shirt!!!

Leave a comment here or on her blog and tell her what you think!!

I'm loving it and wearing it out tonight as I celebrate a friends 2 year post transplantiversary!!!

Tuesday, November 23, 2010

PICC Placement Fiasco

I don't know what to say about this even except that I have never been so scared in my life.  I thought I was going to die and I kept repeating over and over in my head that I didn't want to die this way.

Rapid Response had to be called during my PICC placement.

I don't remember too much after the initial excitement, and I only remember bits and pieces during.   What happened was this:

The PICC nurse was placing the line bedside, as I have always had done.  She had a little resistance at first but it finally went in.  As she got to the end, the walls started to close in, my stomach dropped to the floor and I thought I was going to pass out.  Then my throat closed.  This was in seconds.  I told her something was wrong and started yelling I couldn't breathe and to help me.  Next thing I know there are people everywhere, a nurse rubbing my head telling me everything will be OK and a doctor rubbing my feet shouting orders.  I heard them mention the code cart, rapid response team, Benadryl and O2.  A mask was placed on my face at full force O2.  Benadryl was injected into my IV line (not the PICC).

I remember seeing a ton of yellow....the gowns they were all wearing.  Looking back I am quite impressed everyone gowned up before coming in.

I remember thinking all I wanted was Peter and I know I mouthed it.  I was crying, hoping that I wouldn't die. If there was any doubt ever about how I felt about him (which there NEVER has been), this whole thing cleared it up.  All I wanted was him.

I was in and out of consciousness.  When I began to come to, I could hear more.  I saw the room empty when they brought the x-ray machine in.  Felt my body moved forward for the plate to go behind my back.  I remember my shirt being pulled up to allow the heart monitor stickies to be placed.  I remember people saying to hang in there.  At one point they asked me to open my mouth, I remember thinking that I didn't want to be vented.  Apparently I didn't open it wide enough because they kept repeating to open wider until finally I did.  I laid there expecting the tube to be put in at any second.  Luckily, I was spared.

Everything was blurry.  I was crying, though not hysterically, my mask was partially covering both eyes and I was groggy from the Benadryl.

I could feel the tightness on my arm from the PICC and remember thinking that I didn't want it and I would deal with peripherals until I could get a port on Monday.  I still have the PICC and it works great.  Looks great and doesn't hurt at all.  The PICC nurse came in later and mentioned I was yelling for it to be removed.  Opps, I don't remember that!

My doctor came in at some point.  I know I looked around for him but couldn't see him earlier.  He hadn't been there at first.  He was across town in a meeting but came as soon as he was paged.  He has been in a few times since then and has been a huge support in this.  He wants to make sure that this doesn't happen again while I am here.

I just finally came off of the heart monitor about an hour ago.  They were watching my O2 and blood pressure.  Both were low.  I am on constant O2 right now because when I remove it, I de-sat to below 90%. This is a side effect from the trauma of the morning.  Something that can and will improve over the next day or two.

I'm shaken up over all this and realize just how bad it can be and how something so "trivial" can cause something so major.

I am glad to be awake, vent free and alive.

(P.S. this happened Friday, Nov 19 and was written that night)

A few days have passed now since this happened and I am learning more and more.  They are thinking what caused this is the nurse pushed the PICC in too far to my heart.  This happens very RARELY but when it does it causes all sorts of troubles.  With me, the troubles were multiplied because of my already horrible functioning lungs.

As I meet more people I am also hearing more and more.  My nursing assistant today was there on Friday and she was telling me some things.  Like how people were outside of my room praying I would make it.  How everyone was pulling for me because I am so young and too young to die.  I won't lie, this made me cry.  I know that part of it is because know one knew what was happening, but also that I was in a pretty serious state for a short amount of time (though to the people working on me and to me I am sure it felt like an eternity!).

I wasn't going to post this originally, but you can see I changed my mind.  I've told everyone that needed to know what happened, so now the rest can hear about it.

I am fine now, no adverse effects from the fiasco.  However, I will be using IR from now on for PICCs unless I decide to take the plunge and get a port.

Saturday, November 20, 2010

Special Visitor

Many of you may remember my visit with CG back in March while she was inpatient?  If not, here is the post.

Well, yesterday afternoon she came to visit me!  It was nice to have company after my little ordeal yesterday (a blog may follow in a few days explaining, I have written it but not sure if I will post it) and chat about it with another CFer.  

She was kind enough to bring me some goodies!  I got one of her new tee-shirts (which I LOVE and can't wait to wear when I get out of here), a book - Sick Girl Speaks by a friend of ours that had 2 double lung transplants, and some fun snacks.  

It was great seeing her and her post transplant adorable self!  She's so bubbly and full of life, I can't imagine not being excited to see her!

Thursday, November 18, 2010

Insurance debacle

This post is going to be very confusing because the whole thing is still confusing to me.

As much as I love being able to get insurance through the state, I am finding that it is truly a nightmare.

We can all remember my issues with getting coverage in the first place (if not check out the posts labeled insurance) and how glad I was that I was finally approved.  Well it turns out there was a huge snafu somewhere along the line and I have the wrong coverage...twice.

In April I was approved for Health Safety Net.  This being basic hospital coverage in case something happened I would be covered at a hospital and all all community health clinics (i.e. those places you see on TV where anyone with out insurance can go to, a breeding ground for germs, ewww).

In May I submitted forms to show my disability to get covered under that insurance.  I was still not covered for anything else and paying out of pocket for my meds.

In June, a decision was made (though I have no paperwork on this, I found out by calling on Tuesday), though what I still don't know.

In July I was officially granted insurance with MassHealth Standard, Neighborhood Health Plan.  Cheap co-pays on meds, no premiums, no co-pays on doctors.  Perfect.

Fast forward to November when I receive the letter stating my MH Standard is being dropped because I make too much money.  And that I am being switched to CommonWealth Care.  Have to pay a premium, which is still cheap and co-pays on everything, including doctor visits.  No biggie.

Then comes this Tuesday when I hear from the Social Worker at clinic so we can figure out my impending hospitalization.  Apparently I am not supposed to be on CommonWealth, but I am supposed to be on CommonHealth.  Yes really one letter difference.  CommonHealth is for those disabled and premiums are based on a sliding scale of income.  I was supposed to be informed of this, through MassHealth, but never was (letter lost in the mail perhaps?).  There is a qualifying clause in order to start the coverage.  Either meet the $5688 deductible or have a letter written saying you work for at least 40 hours a month.  THANKFULLY I just started that consulting work and can get a letter from them.  This coverage will be backdated to October 25th, so my appointment yesterday will be covered.  However, I am still unsure about the hospitalization (which starts today at some point).

So that is my insurance dilemma in a nutshell.  I have insurance, just don't know how active it is.  I paid my first months premium on the insurance I am not supposed to have, so I don't know what will happen with that money.  And I have no idea how long my IV stay will be.

But hey, on the bright side....I will still get my meds in there and be covered by SOMETHING!

Sunday, November 14, 2010

Shameless Blog Plug

Have you checked out my creative blog?

If not you should do so :)

Friday, November 12, 2010

Bad day turned into a week

That day I wrote about on Monday...hasn't ended yet.  In all honesty, it has gotten worse.


I think it is time for IVs.


I don't have health insurance right now, only hospital insurance so for me to get IVs I have to spend a minimum of 14 days inpatient.


I've started an email to my doctor to send to her on Tuesday so we can decide what to do.  I could try a round of oral Cipro but I think I am too far past that.  I cough constantly, and not just my normal cough, a nice hacking mucus filled cough.  My energy is crap and don't even get me started on SOB.  OK get me started, its so bad an 8 year old commented on it today!!!  Her words "why are you so out of breath?"  This was said after walking maybe 50 feet to my Jeep to get in.

It's bad.  My peak flow numbers are horrific; 190-200 pre-albuterol, 250 post.  I usually hover between 300-350 depending on the day.

I was HOPING to wait till after December 1st when my insurance is scheduled to start again so I can be in for 5 days then finish the 14 days at home.  But Peter doesn't think I should wait, and if I think about it I don't think I should either.  All it is going to do is cause more damage to my already shitty lungs.

And then of course there is Thanksgiving which I would have to miss and my last two art classes.  And Peter and I's 1 year anniversary.  I'd be getting screwed in all directions!

So the plan is to email Dr. D.on Tuesday and she what she thinks.  I can almost guarantee she will admit me.  But fingers crossed she will want to wait (though I have to really think if I want to wait) and allow me to spend my first "real" holiday in MA, away from my family, with my new family, instead of in the hospital.

Monday, November 8, 2010

All my spoons are spent

Days like today I get scared.  Days like today I get a glimpse into what my future holds.  Days like today I think CF wins a bit

It is 2:30pm.  I woke up at 11:30am after 11 hours of sleep.  I was still tired, still wanted to sleep, but I knew I had things to do.  Like clean and laundry. At 2:30 I am 2 loads into 4 loads of laundry and done cleaning.  Not the good tear-the-house-apart-scrubbing-everything kind of cleaning.  Just your basic dust the tables, wipe down counters and vacuum cleaning.  Then I showered.  Now I sit panting, gasping for breath, with a high (122) heart rate but decent O2 (94).  Pain in my lungs and back.  A desire to lay down and sleep the rest of the day.  And a low grade fever (99.1).

All my spoons have been spent.

I have about 2 days like this a week.  Sometimes more, sometimes less, but on average 2.  Admittedly that is fairly good for a 30 year old with CF.  Especially one on SSDI and +/-40% lung function.

I dread the day when those 2 days become 4, then 6, then everyday.  This feeling is no fun.  It's horrible and I don't know how people do it.

Friday, November 5, 2010

I think my body might hate me?

But at least it hates me in a common way.

Yesterday I had my ultrasound on my ovaries to check to make sure that the Lynch Syndrome was not following me to other organs.  All was well until she found a cyst on my left ovary.  She made sure to tell me they are common, but because of my family's history and the LS, the doctor will definitely want me to be checked in a couple of months.  And that she will be calling me Monday or Tuesday to go over it all.  She needs to examine it and make sure it is just filled with fluids, and not abnormally large.

It was kind of interesting to watch it all on the screen.  I felt like a soon to be new mother laying on the table, trying to make everything out in the black and white areas.  Only difference is we were hoping to not see anything, and I didn't get a fun little print out.

She the link below for information:
Ovarian Cysts

I am not worried about this.  I know a few friends who have had cysts and they were gone in a few months on their own.  I just worry because I know one of my aunt's had cancer around the reproductive organs and I can't remember which organ, or which aunt.  I will have to make a few phone calls to find out.  It is just another inconvenience of my body, growing things in places things should not be growing.  Like the pre-cancerous polyps found in my colon last year (which I have a referral from my PCP to see the GI doctor at Brigham's once my insurance is back December 1st).  Or the polyps growing in my nose.  Or the extra mucus in my lungs.  Just annoying when all added up together.

Tuesday, November 2, 2010

Saying Goodbye to a Friend

I am absolutely heart broken right now.  A friend of mine is slowly taking his last breaths.  His wife has made the choice to remove him from the life sustaining vent and let him be at peace.  I can't imagine how difficult that choice had to be.

Please say prayers, send good vibes and thoughts to Seattle WA, as they transition through this.

Here is her blog.

The TIPS procedure did not go so well.  He was vented afterwards, removed and sent home within a few days. Then the next day was placed back on the vent and has been on it since.  He was waiting to be listed for a liver and double lung transplant.  Unfortunately, he never got the chance.