rubber...does not withstand time

So after 9 days in the hospital, I finally get home and go digging for my rubber picc line proctor to have a shower at home. None of this saran wrap medical tape, rip off of arm business.

For some reason, I never threw the dry pro picc line proctector out. Maybe because I used it for like two years straight and sentimenal value? Maybe because I've had it for the last 5 years? Nah. This thing needs to be chucked, but I just never did. So I went digging in my cabinet in the washroom for this hunk of junk. Low and behold it did not get thrown out with the trash along with the ton of other stuff I thought I'd never have to use again post tx, medicine, lines, tubing, puffers, masks, etc.

Turns out it was not much better then saran wrap...as I had to completely tape it up with the medicine tape I swiped from the hospital before I headed home...and then it ripped again as I was pulling it off of my arm after the shower.

I ordered a new one.

Dry Pro Picc Line Protector. A life Saver in the Shower...or at the beach. 

Let's blow this pop stand!

Photo Credit: http://www.flickr.com/photos/smilla4/3383905630/

I've probably started this blog over about three times...deleting everything I've written.

There has been so much sadness this week, I don't want to depress you readers, but really there is no other way to write it. This week was just sad.

Getting out of the hospital was HARD. If I could fix the system I would. It seems so simple in my mind, yet....home care seems to not understand...the transplant hospital sometimes doesn't get it either. I guess I'm used to the hands on, comfortable care from my CF clinic. Where they understand that we as CF'ers know a whole TON about our disease and can do almost everything ourselves...with our eyes closes. Transplant hospital....they see a lot of old people who have NOT been doing IV's since they were 13 years old, with a blind fold on, asleep.

It's been 8 months and I still hooked up everything, pump, extension on picc line, meds, lines, the whole bit, at 10 oclock at night SANS nurse. Is it bad that my memory does not fail me for this? I've done it so many times it is now ingrained as second nature? like riding a bike? like skipping rope? like swimming? I don't know whether to be sad about that, or rejoice because it meant I could skip out on the home care nurse coming to my house tonight. Totally self reliant. I just needed a breather from the medical staff world for 5 minutes.

It seems all my buddies and me decided we should all go in to the hospital at the same time. My friend Sean, who I adopted myself as his little sister, is a 35 year old charming guy who got his call two weeks ago. He was going along swimmingly, (wow I've used the verb swimming, a ton this post, can you tell what I have on my mind?) but like every transplant, he's now into the bumps in the road. He heads back to surgery this weekend to realign his sternum, for being too active, and causing it to shift, thus causing little punctured holes in his right lung, wreaking havoc and leaking all over him. His family and friends live at least two hours away depending on traffic, so me and my mom tried to take care of him, bringing him food etc, when we overlapped at the hospital.

My friend Bree had a transplant a year and a half ago was also in the hospital this week...she just got some devastating news she's going blind and they don't know why.

And my dearest friend, my cystic sister, Lind is in the hospital fighting a raging infection.

Boo to all this bad news eh? My heart crumbles a little for each person.

Maybe since spring is coming, we all decided we had better get in and out of the hospital before Spring gets here and the warm weather drives us nuts!

Summer is so soon. I didn't even have to wear a winter jacket today, just a blazer and sweater. I feel as if my body has been enclosed in winter, heavy, sullen clothes for YEARS. If you could only know, how excited I am for summer, and running on the beach! Yes I can run now! Thank you muscles! oh man oh man oh man! SO excited. Counting down the days! I'm serious. I'm really counting down the days until June. Pathetic? No.

Excited. Beyond. Reason.

Tonight was great though. Being home I think cures me more then the meds do? no? I went out grocery shopping late tonight (24 hour store, weee). I REALLY had a craving for ice cream. I had not driven in So long since living in the city, and it was great to turn up the music and thank the world I'm alive (and feeling friggin fantastic again). Organ donation...saves lives...wonderful wonderful lives! People who deserve to live, and people who really do not deserve all the crap that is handed to them...B, S, and L...thinking about you guys like crazy...in the words of Dora, from Finding Nemo, (Yes i am quoting a cartoon movie) "Just Keep Swimming, Just Keep Swimming"

still here....

I'm still here in the hospital. Seems a lot of us our here. A few of my friends are on the floor too.

It's weird being here this time, when in the atrium I can walk to it by myself, sit down on the chairs without falling, get up out of the chairs without two people grabbing both my arms and hauling me up. Life sucked 8 months ago in here! so glad things are different now. I sit and I'm antsy to go home. Although there were a few days when I had to look up from my hospital bed with squinty eyes and say "can you die from a fever?" I felt AWFUL.

I think the CMV virus ganciclovir (sp) is helping. All my blood work is coming back better and better each day. They say 7 week total of treatment for the CMV virus they are just not sure what percentage will be IV and which will be orals. All I can say is summer is coming, I just want to go swimming and NOT have another picc line in for ANOTHER summer. I finished reading 'She's come undone' by Wally Lamb, pretty good book, sad and all, just when you think things can't get ANY worse...they most certainly do to this poor girl in the book. Her only friend is diagnosed with aids and since he's immunosuppressed too, he then gets the CMV virus and then goes blind...I'm like 'aye aye yai....not something I need to be reading right now!' So I started another book, 'Secret Daughter' VERY good so far. I like it a lot! Reading up a storm in here, as the internet is shotty. At least today I got a picc so I'm able to leave the hospital confounds! Cinema maybe? yes please.

The only other problem now is I have an infection....pseudomonas is back! with attack! BOO

I've been coughing, more sputum etc with this infection. So they started me on IV meds for that. So currently on 2 meds, twice a day.

I have been begging since last thursday to get a picc line in. I was in here 5 days, and 4 of my Peripheral IV's blew....what does this mean you ask? A whole lotta pain and bruising and swolleness and lucky me, hard bumps in the vein afterwards. I'm a hard poke, so getting another IV back in.....not fun. I look down at my arms and they look as if they have been put through a meat grinder. It's awful.

So I broke down in to tears (after looking at my poor pin cushioned, meat ground, purple painted, scarped, raw arms filled with holes) to a transplant clinic nurse, begging for a picc. I just had no where else to put these dumb little peripheral IV's. I'm not used to waiting days even a week for a picc line! Thats gotta be bad on your hand IV since the drugs are so toxic. Yes the ganciclovir has a big toxic sign on the front of it, and the nurses have to wear gloves while handling it...i'm like 'uh, you know thats going DIRECTLY into my body right'....Oy vey.

I've also started ceftaz for the pseudomonas infection. I'm a little bit more nervous about this one...bacteria in the lungs and I'm not a year out yet. wump wump. Not cool.

Alright now that you've just read all that bad news....the good news, the picc line went in swimmingly! Usually it's a disaster! haha and I hopefully get to go home by the middle or end of this week! Hopefully in time for modern family on wednesday night. In here you have to fight for the tv in the lounge area...obviously I win, come on guys, I'm all muscle now, but it's still a bit of a debacle wrestling the remote away from a 75 year old man who just had a liver transplant. haha

kidding....I always ask nice. ha

nurses....they are the bomb.

First of all, Who's negative Nelly, sad Sally, grumpy Gus in the post below? oooo yeah the girl that had a fever of 39.4, could barely open her eyes and felt as if her brain was too big for her skull causing excruciating pain...yes, yes, that girl. Well she's gone for now!

This morning I woke up fever free (so far) and headache free as well. And I actually slept. I will never under appreciate the quality of silence when you're sleeping. I went to bed at 11 last night, and woke up at 6 to the nurse waking me up. I cannot believe I slept through the whole night. My new room is amazing. It's at the end of the hallway, as far as you can get from the nurses station. It has a great view, HUGE windows.

For a hospital room, this is a little slice of heaven with some strawberries dipped in chocolate on top. Isolation is the best.

Second part of this post. Can I just say and reiterate again and again, how friggin' awesome Nurses are? They have to deal with THE worst stuff on this planet, and they do it all with a smile and a "oh we've seen it all before"....why? why do you have to have seen it all before? I do NOT want to go in to nursing, not now, not ever (even though I feel as if doctor lingo is my second language)

Now that I am coherent this time round in the hospital, my roommate was not so much. She was back at the stage where I was 7 months ago. She cannot walk, go to the bathroom, barely eats on her own...life is difficult with her weakness. I cringe remembering every detail that she is going through. The nurses just do it all with a pep in their step and a smile on their face. I cannot get over what they have to do....most of the time I want to say 'ew' to it, squint my eyes up real tight and plug my ears, but kudos to them! Nurses you rock.

On todays agenda, find some ice cream, with maple syrup and chocolate chips (my throat hurts, and I have SUCH a craving for it) also advocate a picc line.

Can you believe I'm advocating for one? Well these hand IV's hurt. I mean they don't hurt, they're just friggin' annoying. Also my IV antiviral medication has a big toxic sign on the front, almost all meds except saline should not be put through dinky hand IV's anyways as it's so hard on your veins (some days I feel as if we are a toxic waste land fill, and they are pumping us full of meds which are really neon radiation and we will turn soon start sprouting an ora of neon light, and maybe grow some antennas) and after one blown vein, and about 6 pokes in my arm for blood, I'm done being a pin cushion. Picc Line please. Ativan...oh heck yes. Check.

feel like garbage

yelling, screaming, beeping, weeping, talking.....get me OUT OF HERE!

I had the worst night EVER and even more of a horrendous morning waking up.

My roommate likes to read at 3 in the morning? Our room is also right across from the nurses station. It is the loudest I have ever heard anything in my life. Take a construction team, add a jack hammer, and a wood pecker, and that was what it felt like inside my head this morning. Add to that a fever of 39.4...and ladies and gentlemen we have THE best day anyone could ask for? sarcasm much. I did not sleep well last night.

I was moaning and groaning and cowering under my pillow trying to get away from all this. 'This' being, the constant phone ringing off the hook, (everyone on the floor calls the desk that was RIGHT outside my door) hearing ALL the announcements, hearing every single nurses conversation (although I did manage to over here that there are 2 cepacia positive people on the floor, so at least I know to stay clear of them.) I did not get an reprieve until around 4 oclock today. I have had some coughing, so they do not know whether I have a cold, or an infection or something, so thank the heavens, they have isolated me and I get my own private "suite". For the first time this afternoon, I was able to sleep in peace, close my door, and I woke up and the fever had broken. Sometimes it pays to have a little 'hack'.

Still have cough, fever, headache, sputum, and CMV virus at 3800 counts. Continuing on meds. Here's to hoping I don't wake up tomorrow feeling like absolute garbage again.

I gots da CMV.....virus.

Wouldn't you know the day after I go out and spend money in the 'fancy' grocery store because I have had a fever all week and sick and could not get to the 'regular' grocery store, that of course after I spend and splurge and indulge myself with all this great food.......the next day I get a phone call around 3pm saying well can you be at the hospital for 5pm. My blood culture came back and I have the CMV virus, because I've been feeling so shotty lately, they're starting me on IV instead of oral meds.

AWesome......boogus. First hospitalization since transplant.

I have not been feeling very well for the past month I had this ear thing going on, then I had this stomach thing for three weeks, and then I have had this fever, headache, chills and shakes thing for a week.

Sunday I ended up in emerge because I totally freaked myself out since I could not get warm, was shaking so bad, yet had a raging fever, and then carrying my bags I was like "oh no flashback to CF lungs"...felt a tad short of breath. SO of course I rushed to emerge. They pumped me full of fluids since I was so dehydrated.

I went to clinic Monday and they thought it might be infection, with the increased cough etc, so they booked me an unexpected bronchoscopy for wednesday to check if everything was cool down there.

Anyways long story short, I'm glad they finally know whats wrong with me, after me going back like week after week, saying "something is wrong with me!...help." but the blood work never showed CMV finally we have an answer, and I am in the hospital and have started treatment. I didn't get to see a doctor since they had all left by 5. So tomorrow I'll know what is up, is up?

I did all this without my side kick, mom. She's enjoying the beach, down in barbados! Had tons of other volunteers. Thanks Aunt J for driving me to the hospital tonight.

Also I just heard my roomate say this to someone "same shit different shovel"....applies nicely to me too. haha