Friday, August 28, 2009

Rough day in my head...

Today was a bit rough for me. I found out some news last night about a fellow Cyster and it upset me. Then today two more Cystics passed away (neither of which I knew but it is still sad to me).

My Cyster friend…I met her 2 years ago when I joined that dreadful site. We chatted and I looked forward to her blogs. She is very religious and was dead set on not getting a double lung transplant. I found out last night she is starting the evaluation process. She has turned very sick lately. Well, its been on going and I remember her having many bouts in the hospital but her FEV1 was always higher than mine. Now, she is sick, real sick.

I also have a few more friends that are either listed or that are starting the evaluation process. It just seems like all of a sudden lightning struck and now Cystics are falling left and right. It scares me…I admit it.

I worry that I may be next. These are people that DO what they are supposed to do. They take care of themselves, they do their meds, they have rearranged their lives to fit in more treatments and exercise. And yet CF is still winning.

What if that happens to me? What if this time next year I am being evaluated? The thought terrifies me. Especially since I woke up this morning with my phlegmy cough again. I’m not ready to give up. I want to keep going. I want to make it to 35 with these original lungs. But how can you keep the faith when you see fellow Cystics doing what you do only to not win?

I’m not giving up, far from it. But it terrifies me that no matter what we do, we can still loose. Today was just one of those days where it was not easy to deal with. Normally I am like oh whatever CF, suck it! But today, it hit hard. I’m entitled to that day right?

Tonight I would love nothing more than to crawl up next to someone with strong arms and just lay there, thinking everything will be alright...

Monday, August 24, 2009

I am PICC free!

Today was clinic day. THEY PULLED MY PICC!!!!!!!!!!!! Yay!!!! It hurt like a b*tch but it was so worth it! I am still sore right now and I have a nice size hole in my arm. But tomorrow morning when I shower for work I am going to feel like a million dollars! I can not wait wohoo!

So for my clinic appointment…

My numbers are back to baseline…44%. So yeah down from when I went home 2 weeks ago at 53%. My only thought is that I had my Albuterol and Atrovent neb literally right before transport came to get me. Otherwise I have no idea. I know you can fluctuate with IVs etc so that is a possibility. But I feel great so I am concentrating on that and not the dam numbers! And my lungs sound good with only my one trouble spot.

I mentioned the reflux acting up again and he said to try 3 days of taking a Prevacid in the am and again at night. That should calm it all down and get me back on track. If not then we may need to increase my dosing.

I told him about the couch to 5k program and the NP wants to try it too! Awesome! He laughed when I told him I discovered I need O2 when jogging. But he told me to be careful and make sure that I am concentrating on my breathing and not letting it get shallower as I progress. I need to maintain my breathing and heart rate.

He almost made me cry and I was very touched by this. He took my hands and looked me in the eyes and asked how I was handling the Lynch Syndrome diagnosis. We talked about it a bit and I am fine with it. Nothing I can do to change it and like he said I didn’t ask for all these bad genes. He said with all the stuff to deal with CF, adding something like this can be hard to handle. Good thing I’m on anti-depressants already then huh?

I chickened out on talking about switching or weaning off of the anti-depressants. He is like my second dad and I feel so weird telling him I have no sex drive! He has been my DR since I was 5 so I dunno…just kinda weird. I will eventually I am sure. This is a nice intro into my sort of next topic. I am working on a long blog. A TMI blog of sorts about sex and CF women. I have been having some issues in that department (hence why I want to change my A/D around) so I have enlisted the help of some fellow cysters. Once it is all done I will be sure to post my results!!!!!

Sunday, August 23, 2009

Week 2 of my exercise program!

I started my week 2 training for the couch to 5k. It whooped my ass yesterday! I can only imagine today haha! I definitely need to get O2, and I ordered longer tubing from my DME company. They were “delivered” both Thursday and Friday, I found a 2nd attempt note on my front door Friday when I got home from work. WTF my mom was home all day both days! Dam UPS driver didn’t see the sign that says USE BACK DOOR! So they are going to try again Monday. I really need it because I can feel my heart going out of control when I am jogging. Luckily my mom’s boyfriend moved the treadmill to our front porch so I can run the line from my room only about 50 feet instead of the 300 it would have been to the garage. I was planning on doing it this weekend but they surprised me Monday with it. I was so happy!

I had a horrible PICC dressing change on Tuesday and now I want to beg for a port. I ended up coming close to passing out and then threw up. Before I pass out I always vomit and if I can get it all out of me then I won’t pass out…I’m nuts I know. The woman was incompetent. One she was so large I had to practically sit on her lap so she could reach my arm. Two she muttered “hmmmm” and “opps” too many times for my liking as she was removing the dressing. It hurt so bad and she ended up pulling the line out some! They are measured to land at a certain spot in your heart area so moving it is not good! It was only about a quarter to a third of an inch moved but still. I can see where the line laid on the opening before. There is blood caked around it. I had to get up twice to throw up! Her final comment was “well it’s coming out Monday so I won’t worry about that”!!! I didn’t even ask because I was afraid I’d pass out totally and she is so large she can’t bend over and we were home alone and I would die LOL. So needless to say I am going to see if I can convince Dr H. to let me get a port next time!

In other news, I was asked to be involved in another study. I can’t talk about it though but I am SO excited to do it! I was also told that I shouldn’t mention any research studies I do in my blog so OPPS!!!!!!!!!! I’m not deleting the ones from the Inhaled Cipro study but I may see if I can get them to be available only to my followers.

Today is my girl Bree’s birthday! And the best part?!?!?!? SHE IS HOME FROM THE HOSPITAL!!!!!!!!!!!!! She got home on Friday! Amazing! The best birthday present anyone could ask for!

Friday, August 21, 2009

CF video

I just found this on a new bloggy friend's profile:

Sunday, August 16, 2009

Exercising my tushie off!

Nothing too much to update on. Still doing my IVs. Hopefully I get the PICC out this week. I don’t see why I won’t. I still feel great, even if a little run down. But working will do that!

I was able to exercise again today and I only de-sated ONCE!! Lowest I got was 88%!!! Last weekend I was as low as 83% and HR was up to 170 something. It still got up into the 170s but at least my O2 was ok. I am still going to mention O2 for exercising when I go this week. I don’t want to mess with my heart too. Lungs is enough for me!

I have been ridiculously thirsty lately. I have drank more water this past week than I think in the whole month of July! I assume it is the IVs and the concentrated meds that are flowing through my system. But who knows. I will be mentioning that to the DR as well. So much for no issues when coming off IVs LOL!

My BFF’s mom is letting me use her glucose monitor so I can check my sugars every day. I just want to be sure that I am not close to CFRD yet. And if I am I want to get help now before it becomes a serious issue. Since my sugars were 195 one time 2.5 hours after eating it has me a bit concerned (thanks to my cyster Tara LOL). Of course it was in patient and I know IV’s can screw with your sugars. That’s why I want to check now before my PICC is pulled and then for a few weeks after. I am going to keep a journal of what I ate and then what my numbers were 1 and 2 hours post. And I think 1 hour pre too.

Well that is all for now. I will be seeing my DR this week so we can pull the PICC so I will update again after that!!

And also an update on my girl Bree! She is in the step down unit and doing great. I have talked to her a few times on MSN and she is so happy and very tired. Keep up the fabulous work honey!!! You are doing amazing and I can't wait until you are home and can live it up again and tell me all the fun stories!!!! Love you!!

Sunday, August 9, 2009

Yesterday I started my new exercise routine. My awesome Cyster Tara sent me to this great site…it’s called couch to 5k. GREAT program! It might take me a bit longer than 2 months to get to 5k but dang nab it I WILL get there!!!

Can I tell you just how AWESOME it feels to JOG on the treadmill?!?!?!? The first week calls for 5 minutes of brisk warm-up walking followed by 60 seconds of jogging and 90 seconds of walking for 20 minutes. I can do 60 seconds of jogging and usually do 2+ minutes of walking to get my heart-rate and O2 sats back. My HR is getting kinda high – maxing so far at 160+ and my O2 has dropped as low as 84% while jogging. Obviously I need supplemental O2 when jogging. I will have to call and ask about that this week. I have my concentrator in my room for sleeping but from there to the treadmill in the garage is more than 300 feet. TOO far to run tubing!

I feel fantastic having it set at 3mph for my walking and then 3.2 for my jog. By the time my 60 seconds are up I need a break. But it is a start!

Today was a little rough compared to yesterday. I went as long as 2.5 minutes in between to catch my breath and get good numbers back. Plus it is so muggy and hot that after one round of jogging I an DRENCHED in sweat! Never done that before from working out lol!! It also doesn’t make me cough while jogging, but as soon as I stop I start up. I keep water with me to hydrate myself and the combo has been helping me move some good goo out!

I love that I am jogging though. It gives me a reason to go out there and DO it. With just walking I find myself making excuses but now I have a WRITTEN GOAL. Not just some “well I need to do this” type of goal. I don’t care if it takes 4 months to get to this goal. It will happen. And when it does you can guarantee that my arse will be celebrating!!!

Last night I went out with ma girls and we were dancing! Yes I was dancing! YAY!!! I didn’t last too long since it was getting towards the end of the night. But I did it. Tonight I am tired! I was out late and up early to do my IVs. It was kinda fun “shooting up” in the bar haha! As soon as my last treatment is done at 12 I am off to lala land for the night…I can’t wait!!!!!!!!!!!!!

Saturday, August 8, 2009


I'm so flipping excited I can barely contain myself!!!!!!!!!!!!!! I am so happy for her!

She has been waiting for 15 months. I know she had started to get a little restless on waiting and not being able to do anything. I felt so bad for her!

I consider her one of my closest online friends!!!!

Please pray that all continues to go well. She is out of surgery and doing great. We are all just waiting on an update :)

Me in love

I was thinking about this tonight since Kim and I were discussing my love issues LOL

When I fall for some one it can be likened to Alice falling down the rabbit hole. At first its a fast fall, tumbling blindly into the unknown. But just as fast I get caught on a root. It catches me and holds me there in limbo while I decide if I should break free and continue to fall or if I should attempt to climb back out. I've almost always climbed back out, covered in dirt and mud and exhausted from the effort. I vow to avoid rabbit holes for a long time. I've broken a few bones on the way down too, bones that have not healed all the way, nor do I think they ever will. Despite all the broken bones, when I see another rabbit hole I look in and take the leap. Sometimes the roots hit immediately, and other times I start to see light at the other end before I get caught. But either way they are always adventurous and no two holes have been the same.
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Friday, August 7, 2009

Leaving soon...

I wanted to give a quick update. I had my PFTs this morning and OMFG I blew an FEV1 of 53%!!!!!! 1.62 L :) WOW I haven't seen something that high since 2006! I'm so excited!

I have 2 weeks left on IVs so who knows how high I can get...maybe 60%? LOL I'll be happy with staying at 53%.

This means that I am healthy right now and I can start fresh and new and stay healthy!!!! I feel like a partially new person!!!!
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Thursday, August 6, 2009

Going home tomorrow

Well I will be home tomorrow! I have the orders and the discharge coordinator was just in to check on me. Saweeeeeeeet!!!!!!! Its a good thing because I'm running out of yarn haha!!! I've now made a scarf, a PICC cover, a baby hat, and a matching hat for the scarf. I'm working on a shaw for my step mom for Christmas right now.

My other fabulous news is that the polyps are nothing. We caught them way a head of time! So I'm safe from the cancer bug for now!!!! My dad will be super happy! Well my mom too of course but considering its my dad that has almost no colon I think it will be a much happier thing for him.

Speaking of my dad...I enjoyed a nice long chat with him last night. He was telling me about when he had colon cancer. I was 7 weeks old and he asked the DR if he would get to see me talk and walk and go to school. The DR said he couldn't answer that. And look here it is 29 years later and my dad is going strong!

I must admit that I feel awesome! I haven't felt this great in a long while. It really does become the "norm" when you can't breath and you just deal with it. Then when its all done and over and you've been "fixed" that's when you realize just how sick your lungs were! I shall be starting my "get to 50" goal on great footings when I get home.

I'm a healthy CFer and its about dam time I start acting like it! Dancing, socializing, sex, the whole nine yards :)

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Tuesday, August 4, 2009

Colonoscopy etc...

Well all did not go so well on Monday. The GoLytley did not work and I was too full for them to be able to remove the polyps they found. So last night I got to drink some Miralax in Gatorade to flush me out. Now that stuff worked and it didn't taste like shit!

After 2.5 days of not eating I FINALLY got my system clear enough that they could remove the polyps they found. I was whisked away at 7:30 this morning hoping that I was not going to puke. I drank the 3 bottles of Gatorade in 3.5 hours ending at 1:30 am. I was supposed to start at 8 but we all know how shit goes in the hospital. That's why I was so surprised they came to get me so early! But hey I was back in my room by 10:30 so I can't complain

And to make the day better the resident in with the DR was CUTE!!! So of course he was looking at my bare ass and the insides ick! LOL

They did find polyps. There was a really big one in there and then some smaller ones. They have to biopsy them to make sure they are not cancerous yet. Luckily they just snip them out when they are in there looking around! The DR told me that I still have some hard stools up by my appendix and colon where they meet so they took a biopsy of that just in case. If it comes back there are polyps there then I have to get another colonoscopy in a month. If not I'm free for a year!

They were able to do the endoscopy yesterday and he said that came back clear. I have some irritation etc but that is from the coughing. My throat has been sore since yesterday but that's the only side effect I've had from both procedures so far so I'll take it.

There is a woman a few rooms over who has been screaming for days. I don't know what her issue is but they need to shove an effin sock in her dam mouth! I'm getting sick of hearing it! And its not constant just every now and then but at 1am you don't want to hear that crap come on!!!!

I've finished 2 books so far and am working on the third. This one is a bit longer so it will last me. I've also finished one Christmas present and have the yarn to start a second one. One of the RTs brought me in Twilight to watch so I'm watching that tonight! She said she hates vampires too but that this was a great movie...we will see!!!

Hugs going out to all my fellow cysters that are in lock up right now too!!!! And to all those feeling like udder shite! I love you all!!!!!!

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Sunday, August 2, 2009

My Clean Out day

So far is uneventful. Oh FYI this will be a TMI post so if you are not one to read about the things that can come out of a CFers body please stop now :)

I started drinking the GoLytly around 12ish and I have used the bathroom maybe 3 times. I was expecting to be sitting in the bathroom all day long. Instead I have napped for a large majority of the time. I'm exhausted and blame the Zyrtec. I'm thankful I can sleep at night now but man I'm good for nothing during the day. But anyhow...I am somewhat crampy and hope that this will be the extent of it. After midnight tonight I can eat nothing nor have anything to drink. Of course my colonoscopy and endoscopy are not scheduled until the afternoon and there is no set time yet. Basically I will be pushed back since I'm an elective procedure. Pooh on them!

I'm kinda nervous about it. What if they do find polyps and what if those polyps have passed the cancer stage and I end up with colon cancer like many of my relatives? The body can only take so much and I don't know if I could handle chemo. Of course I'm just letting my mind run away and I'm sure if they find anything it will be minimal.

Dr H has me back on fluids through IV since my mucus is not thinning out at all. Production has decreased through out the day but I still wake up hacking out a huge glob of clayish goo.

Boredom has begun to take hold as I have finished one book, am halfway through another and halfway through my SILs Christmas present. I'm hoping my mom can bring me some more books since this one might be finished by tomorrow.

She was supposed to come down today but her boyfriends best friend was found dead in his pool this morning. He drowned. So sad. So if you could all say some prayers for his family.

That is all I have for now. My mood is slightly bleak right now and I'm still so tired. But I must get to my dinner of green jello and lemon water ice. The chicken broth is just too blah!

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Saturday, August 1, 2009


I wanna go dancing when I get outta here! I passed out at a decent hour tonight (thank gawd!) And now I'm awake cause I had to pee...figures!!!! So now I'm lying here thinking about dancing. I'm gonna have to get some of my friends together and go out. Monday is my BFF Kim's birthday so maybe the following weekend we can go let loose. Luckily there is no smoking in Philly so we can go anywhere and I'm thinking Cavanaughs River Deck woot! Outside and great music. I seriously haven't gone dancing in sooooooo long I need to go!!! And fuck it, if I cough up a storm so be it! Maybe I'll bring me a cup and I can save it to examine it later hahahahahaha!!! Its awesome exercise and I haven't dolled myself up to look hawt in a while!!!! New pictures for the profile!! LOL!!!

Ok that's it bye bye!
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