65 Roses in Bloom

Pink Baby Afghan

2009-01-29T14:02:00.000-05:00

Some of you asked to see the crocheted baby afghan I was working on when I finished- here it is! I started it on January 2nd or 3rd, and finished today, the 29th, which is less time than my deadline of February 1st, the day of the shower. No idea if I'll get to GO to said shower, but oh well. I might as well just move into the hospital and call it good. Anyway- yay, it's done!!

Still in the hospital

2009-01-26T07:28:00.001-05:00

That was the view from my room last week- New England has been bombarded with snow, and I get to watch it from my warm hospital room. I'm doing better, and should go home soon. I've been here since January 2nd. So almost a month.

I'm still working on that baby blanket- it should be done by Wednesday at the latest! I'm going to make some booties, too, I think.

I got my light tent in! Still waiting on the lamps. But I opened my light tent in my hospital room and it was huuuuge- 36 inchs by 36 inches. I could have crawled inside, haha. Instead, I took pictures of tulips that my Aunt Deb and Uncle John bought me. Also, some shots from me just fooling around with the macro mode on my camera when the tulips were blooming. (The dry hospital air has since killed them. I feel that way too, tulips.)

I signed up for online sewing classes! There's this website, Pattern Review that sewers use to review patterns and show their projects. Well, they also offer online classes done through PDFs and live chats and the message boards. This is PERFECT for me. I took a sewing "class", but learned nothing a few years ago. The teacher basically read the pattern directions, and would tell me what to do. Not the hows and whys. So yeah, I finished the projects, but I didn't really know how. So I can save these PDFs, with all the info, and go over it till I GET IT and my sewing machine isn't just a doorstop. I think most female cystics should learn to sew just so we can make our own clothes to cover the belly bloat, haha. That's why I'm learning. I could use some dresses that fit my skinny little arms, but still fit my big ol' belly.

Pill Bottle Lamp

2009-01-17T11:48:00.001-05:00

Well, ever wondered if there was an interesting way to recycle all your old pill bottles? A site called Instructables has the answer with a pill bottle lamp.

Technorati Tags general,tutorial

Goings on

2009-01-16T02:36:00.002-05:00

So although I'm still on pain meds, I can see and feel differences in my body. I have a little more energy, I'm doing stuff and planning things. I plan on going to Barnes and Noble with my sister when I'm finally released, I am planning a JOB sort of, and I'm reading again. The job thing is I've decided to make a lot of my crochet and knit things, and start selling them. I have all these plans on how to make several packages that people can buy for babies, new homeowners, etc. It's really exciting for me! I've done a lot of research in my pattern books and online and in yarn catalogs to come up with the best possible ideas, and that's really really fun. If I make enough, I can possibly have a table at a craft fair come next winter.

To sell stuff online, I have made a fun photography purchase of a light tent with some lights. I've wanted one for years to take pictures of my crafts, but the shop has pushed me into definitely wanting to showcase what I make in the best possible way. A lightbox and lights should provide true lighting, a plain white background to make the objects pop.

I've made a late New Year's resolution to read 25 books this year. I'm reading A Prayer for Owen Meany by John Irving right now. I have read it before and love it. From BooksFree, I'm "renting" The Pilot's Wife and The Reader, and I have over 100 books in my queue there. Books are exciting!

I'm trying to do my physical therapy, and while walking is definitely easier (hence the long walk to the gift shops today), it still is hard work. They had me do exercises today that SHOULD be easy to normal people...but...*groans*. At least I know I'm getting better!

(Just to let you all know, this is my THIRD post tonight, so go back if you want to read the rest- one is pictures, and the other is another fun web find post).

New Web Finds to Entertain or Help You Pt 2

2009-01-16T02:14:00.002-05:00

If you use Twitter, try downloading twhirl for your desktop- it has neat quick links to tiny url, and a picture uploading tool for Twitter, and it's super user friendly- the themes for the program are cute too!

Kwiry: SO in love with this one. Kwiry allows you to use your cellphone's texting capabilities to set up your TiVo to record something (I used it to set up a taping of A Very Duggar Wedding from my hospital room!), add a movie to your Netflix queue, send people an email with your contact info (almost like a business card), remind yourself to look for something on Amazon later through your email (say you saw a book in Barnes and Noble, but want to read reviews. You text Kwiry with "Amazon A Prayer for Owen Meany", and Kwiry emails you a link with the search on Amazon for that item!). Send it "Mexican food local" and get yahoo's yellow pages of Mexican restaurants in your area in your email. Send a reminder to look for a certain song on iTunes later when you get home. You can update your facebook and twitter status through it, and set reminders and to do lists. It's great!!

iTrackmine: Catalog all your DVDs, CDs/songs, books, etc, and then friend your friends- you can set up a loaning library! Besides being more organized, of course.

Picasa3: Allows you to fool around and organize your photos on your PC. You can edit them, make a slideshow, create a collage, make a gift CD, upload them directly to your blogger account (I did that with ny last post).

Okay, that's all the new stuff for today. :) I hope you guys like some!

Pictures!

2009-01-16T02:12:00.001-05:00

These are pictures of my old laptop, compared to my new HP Mini. The Mini is so awesome, I LOVE it.

This is a cute little wee Valentine's Day turtle I saw in the gift shop and had to have. Pink and green and hearts!

I bought Hello Kitty and My Little Pony balloons for myself from the gift shop- I will NEVER grow up.

New Web Finds to Entertain or Help You

2009-01-14T11:18:00.003-05:00

When I'm in the hospital, as I previously mentioned, I spend huge amounts of time on the internet, shopping. If it's time to stop shopping, (PUT DOWN THE WALLET, JENN), I've found new sites that really occupy my time and fascinate me, so I thought I'd share with you.

Booksfree: Technically, not free, BUT. It's a site that is to books what Netflix is to movies. For a ten dollar monthly fee, I can "rent" two books at a time. There's a queue just like Netflix. I spent all of last night putting on 120 books. The selection is fairly good, not excellent, but I was really excited by what books they DID have.

Lifehacker: If you never heard of the site, like I hadn't, get thee there. There is EVERYTHING, but my favorite stuff is the gadget stuff- everything from telling me how to be a better photographer, what to do with an old iPod, a search engine to add movie subtitles to movies I've downloaded from the web...even articles on why now is the best time to plan your garden.

Remember The Milk : I love to be organized, and this to-do list site is awesome!

AllTop is like an organized RSS feed reader in a way- you find a topic, let's say weddings, and they have a collection of blogs and their 5 or so last updated articles. I found so many topics, and so many articles I can't wait to go back and read. For example, there was a DIY how to use your iPod instead of hiring a dee-jay for a wedding. Awesome!

And if you haven't heard, the 2008 Bloggies are out, and they provide plenty of sites you can get lost on.

Fluid

2009-01-13T01:59:00.003-05:00

So they did an MRI/MRA on me on Sunday- or at least tried to. It was the first time I really flipped out in the middle of a test. I've never been claustrophobic- but this MRI, I lost it. I HAD to get out of that machine. So instead of 45 minutes worth of testing, they got 15.

The test showed that I have fluid around my spleen, and they don't know what it is, or why it's there. They're talking about it now. They tried to get some of my water weight off with lasix, but it didn't really seem to work at all. I peed maybe twice and then that was it. Boo.

It hurts to eat still. I get so hungry, but within a half hour of eating, I get pain in my abdomen, so they give me morphine and percocet to try to help me through. RIght now, I've had both, but my stomach is STILL sore. Ugh.

Here's a question for you all- when you're in the hospital, do you shop online a lot? I buy a TON of crap, because getting packages while I'm in here is the highlight of my days. I can pursue new yarn and knitting and crochet books or whatever else I buy to my heart's content, and it breaks up the monotony. So just curious as to who else does that. Also, if you're bored, I discovered the 2008 bloggie awards, which shows me new blogs to pursue to pass the time. Just a tip for you all if you're bored. Through that, I found a search engine geared entirely towards finding subtitles for movies, which is awesome for me- I can find a film on Netflix to view instantly, and hopefully find the subtitles with this engine, and I can be well entertained!

I want to feel pretty, oh so pretty...

2009-01-06T00:54:00.002-05:00

One of the things I find lately is that I'm really missing makeup, nice clothing, and doing my hair. I want to feel pretty, even if it's only from the chest up (still got a swollen tummy). I want to go to my closet at home, choose something nice to wear, carefully choose jewelry and shoes, then go shower, style my hair, and then sit in front of a mirror and put on my makeup and experiment. And then I just want to sit there and feel good about LOOKING good.

I'm eating well- I get nice and hungry, but the bloating then makes me immediately uncomfortable and in pain when I'm done. Dr P insists though that the more I eat, the sooner I'll feel better and the gut will go down- she thinks it's a lack of protein and malnutrition. A physical therapist came by today to start whipping me back in shape so I can face stairs/going to stores/getting out of bed, etc when I get home.

I'm working on a baby afghan at the moment- I was working on an afghan for my dad, had gotten into a comfortable groove with it, but then I got an invite to a baby shower on February 1st! I can only pray it'll be done before then. It's for a little girl, so it's PINK! Yay pink! I've been doing a lot of eBaying too- hospital time is shopping online time. Mail is the best! Anyway, that's the update from me for now :)

Progress

2009-01-02T23:10:00.004-05:00

There is so much I want to tell you all! First, I made the decision to come into the hospital. I think some of my lingering pain is lung infection, and the respiratory therapists who listened to me agreed. So it was a smart idea. I need to gain weight (I'm 106 currently, but I'm positive a lot of that is water as I've swelled a bit), and I need to get muscle back, as I'm very weak.

I realized I never got to tell you about Thanksgiving, and there was a pretty funny story there. I was still in pain from the operation and on my pain meds then. My family goes to a restaurant for Thanksgiving with my mom's brother and sisters, and my cousin Lisa has a son named George who is a royal pain in the rear. He's a sweet kid, but is getting a backwards upbringing. Anyway, my family wanted to keep George AWAY from me, so they said they were going to have a special talk with him before the meal. Well, I don't know WHAT they told him, but he spent the day STARING at me, all mournful, and trying to get close to me to touch me. Cute, to a point. The grand icing on the cake was during the meal- every bone he found, he would break and wish for "Jenn to get better" because he didn't get what the wishbone was...so he's break the same bone over and over and over while wishing for my health. While staring at me. Hard to enjoy a meal that way. Funny now, but that day, I was ready to run screaming, hahaha.

Christmas was basically more of the same- didn't feel great, on pain meds, laid low. I bought myself a brand new camera from the Home Shopping Network (pain induced insomnia will make you watch lots of shopping TV, I've noticed, at least for me), and it's FABULOUS. I love it. Andy got me a pink iPod Nano, which is also fabulous and I adore so much. Omg, that pink! It's just the best pink ever and makes my inner girl squee.

For New Year's, I spent it at my parents' house. It's been really hard on Andy to work, deal with his own stress, take care of our apartment, and then play nurse to me. The stress was really getting to him, so I stayed with my parents for a few days, which worked out great since Mom and Dad are both partially retired, and have slightly different hours, so someone was almost always home. And then I decided to come in here. During my stay at my parents, QVC had a special on mini notebooks, and I got a really small HP notebook. It's supposed to come on Monday. I bought it because my current laptop is about 500 pounds (not really, but it's got a large widescreen and is very heavy) and I wanted something nice and tiny for when I'm SICK sick like I have been, and feel too weak to work on my big laptop, or too weak to get up to work on my desktop. This works out well, as Andy's laptop died awhile ago, so he can put a few games on my big clunky one and use it when he wants.

Still though- see why I should stay away from QVC and HSN? In the course of a month, I've replaced all my major electronic toys.

I hope this finds you all well- I love you and miss you, enjoy your comments even when I can't answer because of fatigue. I hope your holidays were awesome.

10 Days Later

2008-12-16T22:10:00.002-05:00

So I had a Christmas party December 6th. I was doing a lot of things for the party before it, and then came the actual party. It was a lot of fun to see my friends, and I laughed a lot that day and enjoyed myself. I knew I wasn't quite me though- I was this weak, tired version of Jenn. But I needed to have this party, because you know how us cystics are...we'll kill ourselves just to try to keep up with the normal folk.

After everyone left, I just lay on my couch and slept on and off. Went to bed early. And then woke up having to all but start over in my recovery. Look at me, 10 days post party, and still feeling uuuugh. Better, always better, but it's so slow.

One of the exciting things was in one of my less than stellar nights, I was watching the home shopping network (HSN and QVC suck me in a LOT at night when I'm awake and can't fall asleep), feeling all drowsy. I had been thinking about getting a new camera soon (it was on my Christmas list of things I really didn't think anyone would get me, lol) because our current digital camera has a lot of problems with any situation that is even slightly lowlight...basically anytime we're indoors, our pictures don't come out. I really liked this camera that Andy's parents own, and in my sleepy state, it looked like this was the same one, with a sale price and flex pay! I got excited and made a mental note to look it up in the morning. Long story short, not the same, but basically the same brand and BETTER. So I bought myself a new digital camera as a Christmas present, basically! It's AWESOME, I can't wait to get it. They said before Christmas Eve, so hopefully all my Christmas Day pictures will be taken with my new toy!!

Lastly, to make this post a little Christmas-y : I have always loved nativities. I think they're touching to look at, and I wish I had the money and space to collect many. But I haven't even had one, till this year. I finally found one that I thought was absolutely perfect- not tacky at all, and it's nice and big. I got it on eBay, but it's really from Party lite.

Santa Tater

2008-12-02T00:30:00.001-05:00

Santa Tater is something I got at a Worst Gift Yankee Swap last year. Something about him makes me laugh so hard.

2008-12-02T00:18:00.002-05:00

I missed my last few Christmas posts! I'm sorry about that. I'm still going to do them :)

Right now is going to be more of an update post on me with some Christmas things thrown in, so it counts as today's Christmas post!

I'm still in pain from the operation. I keep wondering when it's going to be done. I haven't slept well in a long time, it feels like. I can't sleep on my side, so I sleep sitting up, because I also can't sleep lying on my back because of the CF. I drift on and off all night. I keep the TV on to keep me company. I cannot WAIT to heal and be able to sleep like a normal person again.

The pain is withstandable for the most part during the day, but by night time I'm at my wit's end and I take a percocet. It scares me in what is probably a foolish way- I worry I'm addicted to one percocet a night. It's the only time I feel like myself anymore. The pain is so annoying I can't stand people touching me. I can't stand hearing people talk sometimes. I feel so bad for Andy, he gets my biting tongue far more often than he should. He deserves better, but I can't help it.

The one bright spot is my Christmas spirit. Saturday, I went to church for the first time in a few years, and it was very nice. The church was doing that Christmas Giving Tree thing I said that I loved from my childhood! So I grabbed an ornament. I got one for a ten year old girl who asked for a gift card to buy clothing. I'm thinking $50 from Old Navy? Does that sound good for a ten year old? I figured Old Navy is fairly cheap, and will have nice things for a girl that age. Some of the other ornaments made me sad- kids asking for winter coats, or things that are probably far too expensive, like a telescope. Why can't kids at least go untouched by poverty and sickness?

After I got home from church, I was really wiped. I think that was good though, because I slept pretty well. Sunday, I finished addressing Christmas cards, and then Andy and I decorated our tree. It's so pretty. Last year I didn't have any Christmas spirit, so we didn't do anything, but this year, Christmas cheer is keeping me going.

This coming Saturday, I'm having a combination Partylite/Christmas party. I'm looking forward to relaxing and seeing my friends so much. Even if it is while on percocet :)

The Nutcracker

2008-11-29T18:00:00.002-05:00

When I was a sophomore in high school, I was in a group called Diversity of the Arts. It was a great way to get to see shows in Providence and Boston at a student discounted price. I saw Miss Saigon that way, and at Christmas, tickets for The Nutcracker became available. It was an awesome trip- it was during the day, so we got to leave school early, I went with my friends Lisa and Mike, and it was a perfect afternoon. I fell in love with the ballet- the colors, the sounds, the grace. The Boston Ballet really really puts on an awesome show. It made me jealous when I realized that some parents make The Nutcracker part of their holiday yearly tradition- I can't imagine being lucky enough to see it every year.

When Andy and I began dating, he knew I wanted to see it again, and so we saw it together as part of one of my Christmas gifts. Last year, we took his mom. I'm a little sad I'm not seeing it again this year, but who knows about next year. Until then, I have the soundtrack :)

Santa Jenn and Rudolph Andy

2008-11-28T16:42:00.002-05:00

I made this picture last year in photoshop of me and Andy. It's still one of my favorites (and one of his least, haha).

Andy and I like to spend Christmas Eve together. We know that Christmas Day is going to be a lot of rushing around to be with both our families, so Andy takes Christmas Eve off, and we do our own Christmas. We get up when we want, open our gifts, hang out, and then get dinner at a Chinese restaurant. It's OUR time :)

The Holiday Season Officially Begins!

2008-11-27T21:00:00.001-05:00

Advent

2008-11-27T12:00:00.000-05:00

My parents raised me as a Roman Catholic. Although I still think of myself as one, I don't go to church anymore, but I'm hoping to go at least for all the weekends in December up until Christmas. My parents brought me every Saturday night to Mass, and going to church during the Christmas season was the absolute best time of year there.

Advent is a season in the church's holy calendar, and according to Wikipedia, comes from the Latin word adventus, which means "coming". Advent is the period where we wait, knowing Jesus is coming, but not when. One of my favorite songs to play during the Christmas season is not a Christmas carol, but an advent carol, "O Come O Come, Emmanuel".

O come, O come, Emmanuel
And ransom captive Israel
That mourns in lonely exile here
Until the Son of God appear
Rejoice! Rejoice! Emmanuel
Shall come to thee, O Israel.

The song is beautiful, and really shows how the human spirit thirsted before Jesus came. It's mournful, but deep and touching.

Also one of the things I loved were the things that changed about the church that I could see- specifically, the Advent wreath. It's a wreath with 4 candles placed in it, 3 purple, which stand for the 3 weeks before Christmas, and the pink candle, that signals that Christmas has come.

And finally, I also loved that my church would put up trees with "ornaments", that listed a boy or girl, their age, and what they wanted most for Christmas. My parents would let me run to the tree the first night it was available, and read the tags, trying to find some we could take. It's sad, back then I was only a kid, and I wanted girls who asked for Barbies and My Little Ponies, rather than the kids who asked for hats and mittens. I thought those were "boring", and probably just didn't understand why they'd need to ask for those things at Christmas instead of TOYS. (My parents always took one or two of those as well, though, as well as my choice).

Just to let you all know, I played Mary once in the church pageant, lol. I wanted to be Mary, but it felt so wrong since I was so BLOND. I wore blue robes, and a white veil that refused to stay bobby-pinned to my head, so when Mass was over, I took it off immediately. Although NOT funny at the time, my dad saw me come out without my veil and started yelling at me in church to get the damn thing back on my head, he was going to take pictures!!, and me being all of maybe 7 started tearing up, lol. We tease my dad about that so bad now, him yelling at the Virgin Mary in church and making her cry- certainly didn't help his pictures come out too well! :-D

Christmas Countdown Entry 2

2008-11-26T15:00:00.001-05:00

My parents were also big on Christmas. After Thanksgiving, the tree would go up, and we'd start pulling all our Christmas music out of storage. It's led to some weird songs ending up on my HAVE TO LISTEN TO list every year ( Dolly Parton and Kenny Rogers' "Once Upon a Christmas" is pretty high up there, embarrassingly enough), but also some really great stuff, like Nat King Cole's Christmas Favorites, Andy Williams' The Andy Williams Christmas Album, and Anne Murray's Christmas Wishes, are also albums that starred next to that somewhat humiliating (but well loved!) Dolly and Kenny contribution.

The Christmas music collection was kept upstairs in an extra closet in my bedroom- most of them were tapes, but there were also lots of albums, real, true vinyl records, like Nat and Andy. My parents owned a large stereo record player that they'd inherited from my mom's parents, and there was nothing like the first few moments before you heard Nat King Cole start to sing The Christmas Song, when you heard the crackles of the needle floating on the record. Both my sister and I loved that moment...it's the very definition of delicious, and one of my favorite Christmas memories.

Insomnia

2008-11-26T04:29:00.002-05:00

I can't sleep. For the past few nights, my pain meds have stopped giving me those lovin' sleepy feelings, and instead just take away the pain. *scoffs* The nerve. Part of it is I can only sleep one way- on my back, propped up on pillows. My usual way of sleeping has always been on my side, but with my spleen still dying (Geez, hurry up and kick the bucket already, eh, spleen?), it's still swollen and I can feel it move kind of painfully when I lay on my side...like it kind of slides down toward my liver. Just lying down, not propped up isn't an option because of these lovely CF lungs. It was all fine when the pain drugs made me deliciously groggy. Grrrr. Bring back the grog!

Because not everything is about CF...

2008-11-25T15:00:00.001-05:00

I'm announcing 30 days of Christmas here at 65 Roses in Bloom. I LOVE Christmas and am obsessed with it, and the things that bring back wondeful memories for me. So every day from tomorrow on, I'm going to try to write an entry about the things that I love about the holiday season.

The first thing I want to remember, is growing up, at Christmas at my mom's grocery store, there would be free songbooks for carolers. Every year, I would wait with anticipation for these to come out, and then would spend days going through them every year and singing the carols to myself, trying to decide on my favorites yet again. I wish they still made those- I would still do the same thing.

The Rest of the Spleen Story

2008-11-24T14:27:00.000-05:00

So I never wrote about what happened in between getting the procedure, and having to go back in the hospital, then going home.

The day of the operation, my mom tells me the doc called the day before and said he wanted to do something called a splenic emobolization. I had a slight idea what this would entail, as I had a pulmonary embolization about 3-4 years ago. Embolization is just the blocking of blood from going into an area. For my lungs, they kept blood from going into some veins and arteries that bled easily. For my spleen, they had decided they were going to block 60-70% of the blood vessels in my spleen, essentially killing 80% of it.

When I heard "killing it", I sort of panicked a little, since when I had tissue death over the summer, that was PAINFUL. The doctors said this could be painful, but some people don't feel anything. So I had the operation done that Thursday, and felt fine. They gave me a pain pump of dilaudid, which I didn't really use too often. When I felt pain, it was mainly a little stomach ache twinge. I felt find on Friday, too, except I couldn't keep food down. They said my spleen was probably irritated, and things around it like my diaphragm, etc, were irritated from the irritated dead spleen. So anyway, Saturday, I was able to keep food down, and was let out. I went home, and Andy was out at a LAN party, and I told him I'd text him if I needed him, otherwise, puttering about the apartment by myself sounded nice.

I started to feel fevery not too long after getting home, and a little sore too. I hadn't picked up pain meds from CVS yet, and was going to wait till the next morning considering up until then, I hadn't needed any. Around 5:00, I texted Andy and asked him to come home and take care of me, and we vegged around and watched TV. I took a nap around 10, and when I woke up about an hour later, I was definitely feverish and in pain. We took my temperature and it was 101.3, so we started getting ready to go to the ER.

On the way to the ER I just felt worse and worse. By the time we got there, I couldn't concentrate enough to answer any of the doctors or nurses, and I just wanted some tylenol and pain meds, STAT. They kept giving me morphine, but it was only partially dulling the pain. We spent 14-15 hours in the ER, as the hospital can only put CF patients in single rooms, and none were available. It was incredibly uncomfortable. The room I got AFTER though...holy crap. Parts of the hospital have been recently renovated, while others have not. The one I got when I was first admitted after the operation, was on Blake 6, the transplant floor. You have to pay for crappy TV, the room isn't anything to look at. It was blah.

The room after being admitted through the ER was a heaven on earth. Big flat screen TVs, large closets, a lot of space, a desk, wooden floors and doors, nicely decorated bathroom. Oh it was the perfect hospital room. It even had a couch that my mom slept on.

So the doctors who did the operation said what I felt was the norm for the operation. They don't get why the pain was delayed, but that 'omg, please shoot me" pain was normal. THANKS FOR WARNING ME. Instead I spent quite a few days on "catch up" with pain drugs, mostly morphine. They started me with having to ask the nurses for morphine shots, but that didn't work because if I got nothing while sleeping, the pain would crowd in and I wouldn't be able to move. The worst day I could remember, my pain went up to an 8 on the 1-10 scale, and I couldn't move from my bed to sit up. A nurse had to come in and give me two shots before everything felt okay enough just so I could get up and pee. They gave me a morphine pain pump then, which helped a lot, but it was hard to keep the pain at bay, while keeping me from being too groggy. Personally I didn't care. I'd rather sleep all day long than have to deal with those feelings again.

They said the operation was successful though- (which is funny, because they'd come in my room exclaiming it went well, and I'd be clutching my pillows to deal with the pain. Yeah, feels like a giant success). Platelets help you clot your blood, and mine have been consistently very very low since I was 14. Normal range is 200,000- 250,000, and mine have been 20-40, 000. By the third day after the operation, I was already up to 108,000, and now am at 215, 000.

So now I just wait it out. They said within the next week or so I should stop being in pain. They sent me home on pain drugs, but I'm trying to use less of them now. I was really fearful in the hospital I was going to become addicted as I really had to take SO much. And there were times that I would shake as if I had chills, yet have no fever. They think that was some slight withdrawel. Oh and the fever I had in the hospital? They have no idea why I had that. They started off thinking it was CF lung related, although I told them there was nothing wrong with my lungs. Then they thought maybe an infection in the spleen, but it ended up not being that either. Their last theory was that because your spleen is part of your immune system, it was misfiring some signals.

So that's everything basically. Only other thing was the day my legs ballooned to tree trunks. That was attractive :)

Spleen and me

2008-11-14T11:56:00.000-05:00

Yesterday was what I thought was going to be my shunt procedure. But apparently, plans changed. They decided that the best thing to do for me was to just do something I didn't even know they did, which was a splenic embolization. They shoot little pellets into the veins they want to close in the spleen, just like pulmonary embolizations, which I've also had. I'm embolized all over now. They decided because my spleen is so huge, they wanted to embolize about 60-70% of the veins. So they did, and my spleen already looks smaller to me. I had pain last night, but it was more like a stomach ache. They gave me dilaudid. They said because the spleen is close to the stomach I might have problems keeping food down and so far that's true. Blah! I'm hoping I can keep lunch in and then can go home. Mom too, since she's been with me. When I came in, they put me in a double, and I told them I can't share a room, because of the colistin, so they never gave me a roommate, and told my mom she could sleep in the bed, so that worked out great! So we rented both TVs (you have to rent TV here.), which is also really cool, haha. If there was anything fun to do, I'd call this a hotel :)

Discouraging Letter

2008-11-08T19:11:00.000-05:00

Hi all. I've still been struggling with my weight. In addition to this, my back hurts a lot of the time. I joked with Andy it's because my spine is making its way through my skin. It's made it hard to sleep- when I'm really tired, I can go to bed and sleep for about four hours, but then I wake up with the pain, and have to choose either to get up, or to take something for the pain. I have left over pain meds from my various surgeries and when I had that tissue death thing, so I've been self medicating. I know, I know. But it's only one pill a day, just so I can sleep. During the day I can ignore the pain, but at night, it makes sleep a fond memory.

On Thursday of this coming week, I'm going back to Mass General to do more of the shunt procedure. The surgeon called and said they've added some more things to do to me since they saw the results of the dye mapping. They're decreasing pressure of the flow through my shunt, and they're going to go into my spleen and suck blood out or something- they said it has large pockets of blood they want to get rid of. So they're keeping me overnight for pain management, because I guess some people have pain after this, some people don't.

The discouraging part that I mention in the title is the lung transplant team felt the need to send a letter rejecting me. We called them and asked what was going on with that, and they said it's just until the liver people tell them the shunt is operating well again, but I knew that- why send something so evil as a rejection letter? Jerks.

In real life news...I'm REALLY in the Christmas mood this year. I've been doing Christmas crafts, making Christmas playlists on my iPod, and planning a Christmas party. One of my friends had a Halloween Partylite (the candle company) party, and I decided to do a Christmas version, since it's my absolute favorite holiday and I go nuts over it. I'm planning games, with cute special prizes, and food, and a movie (so far A Christmas Story is winning the popular vote amongst my friends).

The other day I went shopping with my sister, and saw cat Christmas costumes- they had Santa, Mrs Claus, reindeer, and an elf. I was sorely tempted, but didn't buy them. I went BACK two days later, and bought Santa and the elf, lol. I've only tried the Santa one so far, with Chloe, and OMG. The pictures are SO funny, I literally laughed for about 5 minutes, till I cried. As soon as Thanksgiving is over, I'm putting them up on my MySpace page. I'm going to use the elf on Izzy, but she's got more of an attitude, and will be harder to get into the costume. Chloe just looked pissed, haha. So the plan is to wait until Andy is around with the camera, and I'll put Izzy in the costume, and we'll take them as quickly as possible. I know, I'm crazy. And yes, I'll post the results here, too ;-)

Should have updated sooner!

2008-10-23T18:20:00.000-04:00

Hi! I realize I'm a horrible updater. I am out of the hospital now, got out on October 12th, and then had a crazy week, between medical appointments, and appointments I had to get ready for my friend's wedding. It was crazy, but I was so happy to have gone to her wedding and been apart of that. Especially since I have to say, I don't think much of her other bridesmaids (and I doubt she does either, after the wedding was said and done). These are her friends, and the differences between us seem to be night and day. For example:

I spent a lot of time trying to figure out how to keep a camera on me so I could get pictures from the day, despite being in the wedding party. Andy had our camera, and I borrowed a small one from his parents that fit in a little evening purse I used. That way, I had pictures from getting ready, the ceremony, the limo, and the reception. Her friends? Their significant others didn't even bring cameras.

Two, both of them left long before the reception was over. Despite me still being SICK and tired, I stayed for the whole thing. I didn't dance much (I got up for Britney's Shameless though, hahaha), but I was there. Anything my friend wanted, I was there for, and she told me at the end of the night she really appreciated it, and saw how her healthy "friends" acted, compared to her friend that she had told that she would completely understand if I wasn't well enough to stay.

Why do I bring all this up in my health blog? Well, because she has another friend now, C. I like C. She met C after the wedding was being planned, so she wasn't able to make her a bridesmaid, but I see much of the same loyalty I have to my friend, coming from C. C stayed for the entire wedding, despite being pregnant, took tons of pictures, and just genuinely is there for my friend. I used to worry if something happened to me, if my friend would lose her only real friend, but now I'm happy C is here, it helps me to feel a little better. Do you guys think of things like this? I worried about leaving my friend to those stupid bridesmaids, but could happily leave her in the hands of C.

Anyway. Monday I was at Mass General to get the much talked about shunt procedure. The plan was to go through a groin artery and expand the shunt, lessening the pressure going through there, and hopefully making my spleen smaller as a result. They decided to do dye mapping of the veins and arteries there at the same time, and said that should take about 20 minutes. Instead, it took 2 and a half HOURS, and since the mapping took so long, I reached the capacity of how much contrast dye you can get before risking kidney damage. So I'll have to go back in a few weeks and get the shunt procedure. BAH!

I'm pretty happy though at the moment. I've been sleeping a lot, been very tired, and feeling hungry. But my weight must be horrible. The scale says one thing, but the mirror image is hideous. You know how people used to use washboards for instruments? I could double as one. Before I left the hospital, I said I would drink supplements at home- I'm doing horribly at that. Why do those things have to be so &(#&$#(& hard to drink?!

More and More Crap

2008-10-07T16:38:00.000-04:00

So today my potassium levels rocketed again, so I had another EKG. They took me off of TPN again for most of the day, and just gave me fluids. Tonight, back to TPN, but they're taking potassium out again.

I'm really no closer to anything. I've been throwing up a little again. Usually it's my cough that triggers it. Only once a day, at least, and I'm still "eating", if that's what you want to call those tiny little snacks. Right now is just full of suckage.

Apparently, after thoroughly looking at my calorie burning, I only need 1300 calories a day, because my muscle mass is now complete crap. So today I have spent time making myself get out of bed to walk around the floor once an hour. I'm surprised at how sore my legs are from that one lap an hour. Weak!

Thanks to those who suggested Megace- I'm pushing for it. The nutritionist thought it was a great idea, so we'll see. And thanks, Johanna, for saying that the n-g tube wouldn't be pure hell. I know one other cystic who chose that over a g-tube, so I'm going to see if I can talk to her about it. I still don't think I'd be able to insert it myself, but who knows. I'm fiercly independent when it comes to my body, so after awhile, if I need to do the n-g tube, then maybe I'll feel differently! In the meantime, Andy and I have joked about it quite a bit- we were saying if he's cooking and I turn down his food, he'll threaten to go get "Mr Tubey-Tube", lol.

Despite all the crap, I'm glad I still have something left of my sense of humor.

Not doing well.

2008-10-02T15:33:00.000-04:00

Food is now the focus of my life again. I remember in August, I was obsessed with it and wanted to make it and I enjoyed it. Now, in October, food is the enemy again. I can't stand reading about it on my daily menus, can't stand the trays when they come up. I sit in front of food and will myself to swallow some of it. Right now is pretty bad, ladies and gentlemen.

I'm on TPN right now to try to bring my nutritional status back up, while I try to eat more. Every day I manage to eat one small meal, and a few small snacks. Today's small meal was breakfast- I threw it up. It's so disappointing to try that hard, to feel proud when you finish, and then a few hours later, lose it.

My doctor is at a loss. The lone theory is that I don't eat enough, so I'm essentially starting to starve. My protein's too low, so that causes problems. Sunday, I retained too much fluid, and needed oxygen for basically the first time in my life. I thought I would feel upset, like CF was winning, but all I felt was relief at breathing a little more comfortably. They gave me lasix, and after the water dropped off of me, so did the SOB feeling.

I am so tired though. I haven't been online too much, because I can't think of anything to do. I can't really read, so I just watch enormous amounts of TV till it's food torture time again. There has been some talk about what to do when I get home. Because my stomach is already scarred up from my shunt placement, they don't think a g-tube is my best option, so they've mentioned nasogastric. I am at the end of what I can do myself- I got used to the port, but I draw the line at putting in my own ng-tube. I told Andy if that's my only option, he might have to learn. We're both SO looking forward to THAT. *eyeroll*

Since my nausea is worse in the morning, some dope doctor thought maybe I was pregnant. Like I don't know if it's possible or not at 28. I relished when it came back negative and wanted to tell him to bite me.

What's the diff?

2008-09-27T15:38:00.000-04:00

Currently I'm updating from the hospital cafeteria. For some unknown reason, my laptop won't connect to the hospital server! I jinxed myself: instead of bringing lots of other things to do, I admitted I just spend all my time in here on the PC anyway, so why bring a bunch of crap? HA. So I've been pretty bored, and watching a lot of TV.

So far, they're treating me for c.diff, although I haven't cultured it (is it correct to say culture?). To be honest, I think so far they're at a loss as to what's wrong with me THIS time. I told my doc it's like trying to block leaks on a sinking ship. She laughed, but quickly said my ship is NOT sinking, it only has a leak or two. I think the theory is some weird virus. Tomorrow, they're starting me on TPN to try to get my nutritional status up. I have lost weight, it's just been very slow.

I feel like a bloated, nauseous cow. It seemed to take me forever to get to the caf because I have to walk slowly to keep from being SOB, and my stomach is bigger than me. It takes work to lug that thing around.

I'm currently off of antibiotics too, to allow some good bacteria to grow back. So that's the update on me. Nightly chatters, I already miss you. I hope that the NY meet up is awesome.

Viva La V-Neck!!

2008-09-25T19:00:00.000-04:00

I am going back in the hospital tomorrow. My doc didn't like the sounds of my shortness of breath from a few weeks ago, nor the fact that since then I've been vomiting and dry heaving and having almost constant nausea. So she's sending me to the ER tomorrow to start testing, then be admitted to the floor. *sighs*

This meant, that I had to change my plans of going to get fitted for my bridesmaid dress on Saturday, to trying to rush from Providence back home to make it in time for the bridal shop's open hours. Luckily I made it, and S was there in her wedding dress. I will say any residual hard feelings melted. I love my friend, and I know she wouldn't hurt me purposely. It's a lot easier to forgive someone when they're an old friend, and they're going through something monumental that they want you to be a big part of.

Lastly...I have made a decision that has taken more than a year to come to. I AM GOING TO WEAR WHAT I WANT. Since getting my port, I have done everything I can to wear only things that cover it. NO MORE. I am going to not care! Go ahead, stare at it! I will wear v-necks and scoop necks, and you are all going to have to DEAL WITH IT. I am celebrating this by buying v-neck t-shirts from Old Navy right now.

Tennis Match.

2008-09-23T18:29:00.000-04:00

The liver transplant surgeon called today. And we're back to just getting a lung transplant.

I am in a tennis match. I am the tennis ball.

They're setting me up to get an operation that will hopefully stretch my shunt. Apparently it's still there, and working, but it's not wide enough to deal with the hypertension. So they're going to widen it, with a stent.

Allow me to try to explain. When you have liver cirrhosis like mine, the scarring of your liver starts to squeeze the liver. Blood flow goes backwards, through the spleen, and then up into the stomach and esophagus. That's how you end up with weak, temporary blood vessels in the stomach and esophagus- they can't deal with the extra blood, so they create the varices. The varices end up bleeding, and you can hemorrhage. Which is what I did.

So, 6-7 years ago, I got a surgery known as a distal splenorenal shunt procedure. They took the splenic vein, and connected it to the renal vein, and took the gastric vein, and left it tied off. That worked! But apparently, not so much anymore. They want to widen that pathway to allow the blood an easier way to pass, and hopefully that'll bring my spleen back down in size again.

I am unsure how this makes me go from being eligible for a double lung and liver transplant, to just a lung transplant. I will ask at my next appointment. For now, hopefully the tennis players are taking a break.

Lately

2008-09-18T14:58:00.000-04:00

I have a lot to update with. I've been avoiding writing because I've been feeling badly. About a week or so ago, I cleaned almost my whole apartment, and felt happy and proud. I rewarded myself with a good dinner, and sitting down to watch a long, good movie. The next day, I felt like I was falling apart. I couldn't breathe, I couldn't sleep, I kept having to get up to use the bathroom. I use the bathroom a lot on a good day, but this time, I wasn't able to sleep through the night. I had to get up several times.

By the next day, I couldn't breathe to walk from my living room couch to my bathroom. I would get there, sit down, and just try to catch my breath. No fever, no bad cough, no increase in sputum. Just a lack of air. When I'd look at myself in the mirror, I could see my pulse in my neck just wildly beating.

This went on for about a week. I was frightened, and I just couldn't deal with it. I'm already on IV antibiotics- what more could my CF doc do? I procrastinated in calling her out of fear of her telling me that there was nothing she could do, and this might be my new normal. All I could think about was a week ago, I was cleaning, and walking around my apartment with ease- and yesterday, I went to the mall, and had to ask Andy to get a wheelchair to push me around in.

I have no idea how this happened, but last night, I took a nap, woke up, and the feeling was almost GONE. And since then, I've been breathing okay again. I don't know how or why, but I'm not going to question it, and I'll just be thankful. The only bad thing is, that instead of being short of breath, I'm nauseous, and have a hard time coughing without feeling green. Only thrown up once so far, but it's not fun. I told Andy though, I'd rather be nauseous than so out of breath I can't move. It was so bad. I couldn't sit with my back against my couch, or I'd have problems breathing. I had to sit forward 24/7. The bathroom thing continues, though.

Yesterday I had another appointment with Mass General. I am SO SICK of the merry go round of transplant. I guess since the ultrasound people saw my shunt, everyone's all excited about that. They're now considering maybe I could just have my spleen removed pre-transplant, and be fine with just getting lungs. Maybe I could get some procedure to put a stent in my shunt and not need a liver. Maybe I do need both. Maybe the sky is really green and we're all color blind. ARRRRRGH. So, I have to wait while they discuss this crap some more. I'm just tired. Yesterday was the day I had to go to the mall and ask for a wheelchair, so it wasn't a great day to tell me I might be waiting even longer to get listed. I've been chasing this transplant dream for almost two years, and that's a lot of emotions to go through.

A couple of weekends ago, I helped throw a bachelorette party for one of my very good friends, S. We've been friends since we were 8, so 20 years. She's getting married next month, and I'm her maid of honor. Yet since the bachelorette party, I haven't been able to let go of some things she did that hurt me.

S is a really good person. But she showed this side at the party that I can't reconcile to the girl I know. When she got there, she was already sort of drunk. The waiter came around to get our drink order, and I ordered water. S says "You're not going to drink anything?" to which I was kind of confused...she knows my health problems, what, I'm supposed to drink and hurt myself just because it's her party? So I said "No" and didn't elaborate, because her work friends that I don't know are there, and I don't feel I should have to explain what "liver transplant" means again. After looking at me during an uncomfortable silence, S finally says "That's okay. C is not drinking tonight either". C is her pregnant friend.

Then later, S says to me suddenly, "I'm going outside in a few minutes to smoke!" I swear, I thought she was joking, and I said "No you're not!" and she said "Yes, I am! I always smoke when I'm drunk". I sit there in shock. It's not that I force my friends to not smoke, or something. None of them do, anyway. Or at least I thought. I don't know. Anyway, she then keeps loudly telling me all the reasons why it's "okay" for her to smoke only when she's drunk, and I'm trying to avoid talking about it. There were much better settings for her to tell me this, not in front of her friends I don't know, and not when she's drunk. I just didn't want to get into it, but her guilty conscience made her keep talking till I told her to drop it, and she could have lied and told me she was going to the bathroom, because I'd never know the difference.

Since then, I've felt angry with her. I figured somehow that someone who has seen what 20 years of lung disease is like, wouldn't stupidly try to excuse smoking of any form, especially to me. It hurts she would put me in such an uncomfortable position by telling me in front of her friends, where I look like a jerk expressing my shock and dismay, and it hurts that she would point out the fact that I can't drink, like I just choose not to because I'm a fuddy duddy. She acted very un-S like. It hurt a lot as well, because I had put a lot of thought into her party. I guess I'm just not very cool.

Why I Got A Port

2008-09-16T13:59:00.000-04:00

People have asked me why I got my port, and I finally found the entries from my journal that describe the days that led to that decision. Getting a port was hard for me, as I didn't want any outward signs I had CF, and I didn't want to be confronted with it every time I looked in the mirror. However, I have grown past that, and realize it was a good decision. Here are the PICC entries that convinced me:

February 28th, 2007

Today. Sucked. I've already had two people tell me that this story made them want to puke.

I slept really good last night. I was really happy about that. At 9:00, they woke me up and told me I was going to x-ray, which I thought was weird, because I was supposed to get a PICC line, and they do the x-ray AFTER the PICC. My nurse, Heidi, came in and said they were doing the PICC down there. So I go downstairs, and they bring me to this room that had an ultrasound machine. I thought it was odd, but figured it was just a treatment room. All the PICC line stuff was set up on a tray next to me. There was this nice nurse lady, who set everything up and told me we were waiting for Mary S, who is the person who usually does my PICC lines, whom I trust and like. The nurse lady starts telling me about how I'm getting a new procedure that the hospital guidelines now have, and it makes getting a PICC line so much better because they last longer, etc. So she ultrasounds my arm while we wait for Mary.

With my usual PICC lines, they just a larger gauge needle, so it's only slightly more painful than an IV stick. They can use a drug called lidocaine to numb your arm first, but to me, it's usually nothing more than an extra needle stick, and it can sometimes make it more difficult to get the vein. So I opt out. I thought today was going to be the same, so I told the nurse lady I didn't want lidocaine.

Mary S comes in, and then she starts ultrasounding my arm. I find out it's her first time doing this new procedure. Please tell me now why I didn't run? *sighs* So I'm her training patient. Mary's excited, thinks she's going to get it, no problem, because she's worked on me so much in the past.

The procedure then advances to where they put a needle on the ultrasound wand, and when they find the vein they want, they center on it, and then puncture. I don't know exactly what they do next, but it felt like this horrible horrible pushing, this painful pressure like they're trying to shove their arm in my vein. I could handle it the first few times with their first attempt, but it kept getting worse, and I ended up doing something I've never done during medical procedures- I said "What the FU- (and this is where I started to cry) CK!" They weren't getting whatever it is they wanted so they stopped.

Then did it again. Same result. Me crying, them having to stop (not because of me, but because they still couldn't get what they wanted) again. Then they tried again. This time, they thought they could place the PICC, (even though when they did the needle pushy thing, I ended up SOBBING and said Stop) so they do something I wasn't expecting, because Mary doesn't do her PICCs like that- they grab a razor blade and cut me. Without drugs. Yeah. THEN, since I'm this crying mess, Mary said I should get lidocaine, to which I'm kind of astonished- isn't the fucking worst OVER? You sliced me, what more is there? I said yes though, because obviously something else is going to go down.

They bring out this tool they call a dilator. It looked to me to be a 2 inch T. They put this in your arm/vein? to spread it. That's why they suggested the lidocaine then. So then Mary puts the wire in the vein, and it won't go further than two inches, at the most. And of course her pushing hurts. Cry cry cry. So they have to quit, and Mary apologizes and says I'm not getting a PICC that day, she has to go to some class, I'll just have to get it tomorrow.

Oh. My. God. I was messed up. I couldn't imagine spending the rest of the day thinking about going through that AGAIN tomorrow, but I knew I needed a PICC line because I have that appointment in Boston next Wednesday. If I don't get a PICC, I can't go home on home IV.

So the nurse lady, who was training Mary, said it was totally up to me, but if it was okay, she'd like to look at my left arm (which they had left alone because I had a bad IV in it). I said ok. She ultrasounded it, and said she wanted to try, but only if I was up for it. I asked her if she could guarantee getting it, and of course she couldn't, so I asked for odds. She said pretty good, and I could stop at any time. So I said okay.

With lidocaine, of course.

So she starts, and does the needle pushy thing, and it feels better than the other attempts because hell, I'm drugged at least a little now. Doesn't get anything. Tries a second time, and actually gets the PICC line in this time. So all in all, five attempts for this fucking thing. This NEW, "better", procedure. After three hours, I got back to my room, and I called Andy and I started telling him about it, and I was SOBBING. It was painful, and humiliating, because I'm just crying away down there, and these jackasses just keep going, don't say anything to me. Towards the end, Mary tells me no one should do that procedure with lidocaine, NO SHIT, what was your first indication, mine was, OH, your first attempt where I was crying and swearing? There were two things that told me in the end they knew they shouldn't have done that to me, one was when I came back upstairs, I told my nurse, who was pissed off for me, and she said yesterday when they called to find out how old I was, which she thought was odd, they said 'Oh good, she's 26, she won't need anesthesia'. Two was I asked the nurse lady if anyone does it without lidocaine, and said no. So why did these fucktards do it to me? I'm not entirely sure. I think nurse lady thought I knew what was going to happen, because I'd gotten PICC lines before. Mary came in late, and she knows what kind of PICC lines I'm used to, but she might have thought they'd already explained everything to me, and I'd said no anyway.

I never ever want to go through that again, and if that's the new hospital procedure, I want a port. I was SO upset. Telling Andy about it made me cry just remembering it, and typing out this entry was hard. I talked to my sister after I talked to him, and was calmer, but she ended up calling late into work and coming down here to check on me. Awww. I have a sweet sister!

This much I will say is good about the new procedure. My PICCs usually go in the crook of my elbow, which is annoying because when it's in use, I can't bend my elbow. The one I have now, is above my elbow, and I can bend my arm as much as I want, which means I can knit whenever I want (which would be more likely if my other arm wasn't sore). I have to find SOME silver lining.

April 13th, 2007

(note: I was supposed to have my cardiac cath for the transplant team done on the 11th, but instead had too high of a fever, and was admitted to my hospital instead)

I had to fast for the cardiac catherization, didn't get to eat anything until noon, went to the hospital and we started talking about me getting a PICC line in. They pushed and found they could do it at 8:15 that night. So after my last horrid experience with the PICC, I didn't want anyone in training, and I wanted something to relax me. So the resident starts talking about sedation, and since I'm doing that, I need to start fasting again. I tell them to hold their horses, I don't want sedation, I just want a pill like Ativan (sp?) or something. They tell me to start fasting anyway, and they'll let me know. They didn't come back, but every nurse that comes in keeps telling me to keep fasting.

So Andy shows up, and we decide he's going to come with me, and when I'm all done, we'll get some food since I'll be hungry. I start getting fevery again, my tylenol wore off, and my temp wasn't high enough to take more yet, so I keep sufferring. Finally, 8:30 comes, and still nothing. We go out to the desk, and it turns out the woman is coming from her office to the hospital, and she's still en route. Back to my room. At 9:00, I told Andy there was no reason both of us had to starve and to get food. After he left, the wheelchair showed up about 5 minutes later and off I went. I get down there, she's setting up, and about 4 or 5 minutes into set up, I ask her about the relaxing thing, to which she said NO ORDER WAS EVER GIVEN, and she doesn't have acess to the meds, do I want to wait while she calls and gets somebody? Goddamn it, no, because I just want to finish and eat and take tylenol because I'm so FEVERY. So that was when I officially started hating my new resident. *sigh* It never takes long.

So, I'm dehydrated, hungry, tired and fevery, and now in pain. I'm going to skip the details, but it took FOUR tries, which is what she says, but I don't believe. She may have tried in four different SPOTS, but those spots all have multiple needle pricks. By the "fourth" try, I was trying to get my arm away from her and was saying "NO, I DON'T WANT IT, STOP IT", even though this one didn't hurt nearly as bad as the other time. Haha, she was chasing my arm down with the needle begging me for one more try. I'm such a pushover, I hate them. I just shut my mouth, stared at the ceiling like I wanted to leave holes in it and ignored her. Luckily, she DID get it that time.

I finally got back upstairs at 11:15, and despite me telling Andy that I just wanted cornflakes, he decided I would feel hungrier than I thought I would be, and got me a buffalo chicken wrap. Which was the right thing to do, I scarfed down half of it and drank a ton of milk, in between my nurse coming in and bugging me to let her do more crap to me and my picc. I don't get how insensitive they are sometimes...I hadn't eaten since NOON, it was nearly midnight, and I had just put up with a lot of crap from THEM. I yelled at her when I got back up here about the drug thing, and my med student again in the morning. It's never them of course, it's "miscommunication" and the "other guys on the second shift". Yeah, blah blah, well, then DO something about it. So when I saw Dr P, I told her I want a port. This is it, after two visits where I'm in huge amounts of pain, and I'm here all the time anyway, I'm putting aside vanity and getting the damn port.

They started testing me to see if I have bacteria on my heart- I guess it's a common infection if you spend a lot of time in the hospital. I had an echo done...yesterday? and an EKG today. The cardiologist came by and said they didn't SEE evidence of bacteria (I had kinda hoped there would be, just so there'd be a reason for my problems that's fixable), but something about how one muscle or valve in my heart beats on the "low side of normal" whatever that means. It's NORMAL. Something is NORMAL. LEAVE ME ALONE. But they want me to follow it up with an adult cardiologist, blah blah blah.

GOOD NEWS:

My fever seems to have broken today, after two days of being at 102.3 when I wasn't medicated.

Holly, my parents dog, came to visit yesterday morning. It was fun :)

Andy visits :)

Glenn, my favorite therapist, did my treatment all day. Best part was he was concerned about me getting sleep, so gave me my first nebulizer treatment just by holding the neb cup in front of my face. I've seriously never been able to sleep through that ever before, so I imagine I really am very tired out.

Getting the port: April 24th, 2007

have a great boyfriend. And a great Mom.

I had my port put in today. I'm sore right now, but it's not anything I can't stand. It "oozed" after the surgery, so I can't use it yet, and it's all bandaged up. It's not in a place I like, but well, tough shit, I guess, haha. I'm anxious to see what it's going to look like when the swelling and bandages are gone, if I can wear the same clothing, or if everything has to have a high round neck from now on.

Anyway, here's why I say I have the best people in my life:

My mom came down here early and stayed all day to take care of me. Then she stayed in the OR with me while they placed the port! I was suprised they let her, and I was surprised she could take it- she gets upset when they put IV's in me, let alone cut me with a scapel. They had drapes up so she couldn't see what they were doing (except the stitches afterwards). So yeah- very cool Mom!

Then my dad and Holly (puppy) arrived, and shortly after, my sister. I have good family that comes to see me. Andy, also part of my family, came down of course. He was good to me, I asked him to help me wash my hair because they got some blood in it, and he did, and then helped me clean up ( I still had iodine stains). He's so gentle and good, and makes me laugh.

Also good, he mentioned something that might happen that would be very good for us. I'm really really hoping this happens! I'll let you know if/when it does.

Also, I'll post pictures of my port when I'm able to. I dunno if I'm the only one, but I find medical stuff fascinating, and I find it cool to educate. Ports are common with cancer patients, and who knows, someone close to you someday might need one, and you can say "Yeah, I know what those are, my online friend Jenn/finding_her told me about it, and I saw a picture". I say this because I heard something awful last night, that a year or two ago on livejournal, a cystic's journal was suspended because someone reported them saying they made up their CF for attention. I was accused of that once, and it boggles my mind. Can you believe that? People reporting their life in their own journal is attention whoring. I wonder if that ever happened to a livejournaler who has cancer or diabetes or something!

Oh, and in case you wanted to know, I named my port. Its name is Cathy Porter. (Ports are usually called Port-a-caths, which to me just makes me think of Port-a-Potty.)

Going to get more morphine soon. Going to sleep! Yay!

*all taken from my livejournal.

The First Visit

2008-09-16T13:24:00.000-04:00

I'm going through old emails today, and I found one I sent to all my friends after my first appointment with the first transplant program I tried to get into. I thought some of you might want to read it, so here it is:

March of '07

I know you guys wanted to be kept informed since my first visit with the transplant staff was today, so here goes.

They got my information, and we discussed what transplant listing would be like- I'm going to have to do a HUGE round of testing, that'll take about 8-12 weeks. Luckily, they didn't seem concerned about my weight, since I'm about 90 something % of my optimal weight for my height. But there were other concerns, like whether I'll need sinus surgery or not. The testing includes a barium swallow, a thoracic surgeon, an echocardiogram, a gynecologist, a social worker, a psychologist, etc etc. And that's just one test! I kid, haha. That would be some test, wouldn't it?

It was actually really hard, because the surgeon I met with was less than encouraging. She called it honest, I called it kind of brutal. She made everything sound horrible, and I do realize transplant isn't a walk in the park. There are things I might run into that could be really bad, and of course, I could die. But the way she made it sound, almost made me surprised she works in the field, considering how hopeless she made it sound.

I'm determined to go through with this, but I'll admit, when I left, I was upset and wondering if I was making the right decision in pursuing this. Basically, she said there's the possibility for literally thousands of things to go wrong, and most patients live an average of five years after the surgery. She said that there are others, of course that live less, and those that are remarkable and live up to fifteen years after. There was much more emphasis placed on things going wrong, than going right, and that's damn depressing.

I left the clinic, and went to go have blood work done. I asked my parents what they thought, if I should go forward in this, as I was feeling discouraged. Of course, they can't answer for me, as I'm ultimately the one who has to go through all this. I went in to get my blood drawn, and there was a man across the room from me who I'd seen in the transplant office. He approached me, and said "Are you getting a lung transplant?" and I answered that I was about to start the testing. He then asked if I had cystic fibrosis, and I answered yes, and he said he was a cystic as well, and was two years out of surgery, and said that what I was doing was worth it. So as my mom said, (and you're welcome to be nay sayers, but I agree with her) that perhaps God placed this man there to give me a sign, some encouragement after my bit of anxiety. If there is one thing I've learned, it's that there are times when God gives you a little nudge when you need it most, and that was mine today.

SO, the news is...I'm going to start the testing, and when I'm finished, the transplant team will meet and discuss the results and vote on how to go forward next. I won't see them again until the day of judgment, DUN DUN DUNNNN. So we'll see.

Port needle changing tutorial

2008-09-02T23:08:00.001-04:00

I wrote this when I was a member of cysticfibrosis.com, and wanted to have it elsewhere now that I'm NOT a member anymore. It's a tutorial I wrote out on how I change my port needle, for port newbies.

1. Wash hands.
2. Open kit, being careful not to touch the inside of the container, or the sterile field's inside. Put on mask.
3. At this point, I open things like alcohol wipes, the port needle, once again, being careful not to touch the item, only the outside packaging. I shake them out onto the sterile field. I've watched my nurses do alcohol wipes two ways, one, is to rip the wipe package in half one way, then turn it and rip it in half the other way, then shake out the wipes onto the sterile field. The other way, is to open them before, use medical tape to hold them to a table edge or something, but without them ever touching anything! This is important!
4. Now, I prepare my flushes. My saline, and heparin are NOT meant to be put on a sterile field, so my nurse told me to prep them, but place them on the very EDGE of the sterile field.
5.Put on sterile gloves. First glove, only touch the folded cuff. Second glove, you can use the other gloved hand to touch the other glove. ONLY the parts of the glove that will not be in contact with your skin!
6. I use the alcohol prep thingie that comes in my kit. It's a sponge on a handle, basically. Starting on the port, in a circular motion, moving outward from the port, I rub the skin for 30 seconds. I basically do 10 seconds on the port, 10 seconds on the skin immediately surrounding it, 10 seconds on the skin outside of that. Remember, inner, to outer.
7. I let that air for 30 seconds. During that time, I set up my port needle, alcohol wipe it, and then fill it with sterile water to remove air. Clamp.
8. I close my eyes, pray, and stab randomly till I feel the port. I kid! I use a makeup mirror with a light (already set up before I wash my hands). I feel for the metal edges of my port, feel for the mushy rubber, and decide where I'm going to stab.
9. Stab. A tip I've been told is to take a deep breath when pushing, as it helps to "meet" the needle.
10. Once in, I unclamp, start to flush about 5cc's of the 10cc flush I used to fill the syringe. At 5 CC's, I then draw back, but I don't draw back much at all. Just enough to let me know it's in correctly. I've heard too much blood drawing can shorten the life of your port, an d I want this sucker to stay forever.
11. Finish flushing with saline, then alcohol wipe again, use heparin. Clamp! Pull out needle! Be proud you've done it yourself! Take off the gloves and mask, too. They suck.

I hope this helps. This is how I was told to do it, but you might get different answers from other people.

*edited to add sevenstars' thoughts. One other thing I do that is probably not necessary for anyone else, is drink a little juice before I start. I once had a low mid-access, and that is NOT pretty, being behind a mask and in gloves while having a blood sugar low!

Twenty Eight

2008-08-27T01:07:00.000-04:00

I am 28 today! I called myself an old woman in chat today, and a non-CFer seemed to be a little offended by it. It's not meant to be offensive. I don't really consider myself "old". But when your parents were told you probably wouldn't make it out of your teens, it's huge.

With CF, birthdays are a different breed entirely. When I turned 25, my best friend's brother, who shares my birthday, messaged me and said "Can you believe it! We're going to be in our late twenties. I feel so OLD." And I...I felt so OLD. So old and happy! Somehow I keep getting older, every year it keeps happening, it's a relief, rather than a curse.

When I was a teenager, I got to know a group of cystics at my hospital. There was D, who would become my best friend, and she was 15. There was B, who was about 22, and had a son. There was J, who was 21, and had a son and a daughter. And there was R, who was close to 40. I was about 17 at that time.

D is now post transplant, having gotten hers at 19. B and J both were listed, and never made it to the transplants- they both died at the age of 23. At 17, I became afraid of turning 23, wondering if that's when I would meet my own demise. R is still alive and well. I don't see her anymore though- she was forced to start being admitted in the adult hospital a few years ago.

So you can see, for someone who was afraid of turning 23, 28 is pretty spectacular. Age is a badge of honor.

A Mother's Touch

2008-08-22T16:08:00.001-04:00

Today's operation went well. They saw varices, but they have remained small, and don't appear to be in danger of bleeding, so yay! They said I can go home tonight or tomorrow, depending on what I want. I think we know what I want. :)

I have mentioned before that I am still seen at the children's hospital, so it goes to follow most of my procedures are also done here. In recovery, I moved to a chair as fast as I could, as the stretcher was only making me cough more. I sat in my chair, eating a cherry popsicle, suctioning out the mucus I was coughing up (haha, yes, they gave me a suction tube rather than tissues!)and just surveying the busy recovery room. To my right, a little boy was wheeled in after his operation. Three nurses hovered over him, keeping oxygen near his face, changing his diaper, etc. A few minutes later, he awoke and started crying.

It wasn't loud screaming, but he was still crying. I felt sorry for him, being so young and having to go through the strangeness that comes from waking up from anesthesia. A few minutes more, and I saw his parents being led in. I saw his mom's face as she saw her crying son, and it was some sort of beautiful- a look of caring and love, mixed with determination. She knew where she was needed, and she quickly handed her purse to her husband, and took her position by her son's head. I strangely felt moved to tears. I don't know if it was the after effects of the anesthetic, or just the beauty of a mother's love, but it was a moving moment. I wish I could have told her before I left, that I could tell she was a good mom.

Alone...desperate...

2008-08-21T14:44:00.000-04:00

more animals

I'm almost at the end of this visit. Been in two weeks today. I am lonely, blogosphere. Before I came in, Andy's car broke down, and so I've only been able to see him twice this visit while we wait for the slowest mechanic on earth to finish up. My parents come in on Wednesday mornings, and on the weekend. Lots of alone time in between. And I am tired. There are, obviously, good people here, but they are not my family, and they have minimal time to stop and chat- after all, they are working.

Tomorrow, I'm having the operation that has kept me in here for two weeks. A simple endoscopy, only not so simple because of my liver disease. There is a possibility some of my varices will look in danger of bleeding, and they'll want to band them. Fun fact- especially large and scary varices are called "whales".

I'm sad I'll be alone tomorrow, as well. My mom only works two days a week, as she's semi-retired, and Andy...well, Andy I'm kind of angry with. Sometimes it doesn't dawn on him that just because I'm a professional patient, doesn't mean I don't get scared, or want some hand holding when these things are happening. He has plans for tomorrow, special plans with his dad, that I don't want him to give up...I just want him to OFFER to cancel them to be with me if I need him. Instead, he has not thought of that, and I continue to sort of stuff down these feelings of unhappiness. Suck it up Jenn. You can do it. *blubbers a little*

In preperartion for the operation, I'm receiving a blood transfusion at the moment. Drip drip drip. Bright red blood. Tomorrow it'll be platelets...which are sort of yellow-ish. Irradiated blood, as I'm a pre-transplant patient. I have asked one of the hospital workers to go with me for my operation, and luckily she said yes. She had something planned for around that time though (a doctor's appointment of her own), so I'm pretty sure I'm doing this one alone.

If I hadn't been in here today, I was actually going on a "Cystic's Day Out" that my best friend planned. We were going to go to Six Flags, me, my best friend (a 7 year post tx patient) K, (a 5 month post tx patient) and K, (the widow of a CF friend of ours). Instead, I'll watch the blood continue to drip, and I'll be wishing to be elsewhere.

Immature or no?

2008-08-19T23:00:00.000-04:00

When I'm hospitalized, one of my big problems is giving up control. At home, I have a set schedule. At 8 AM, Andy wakes me up to start my first IV med. At 10, I wake up again to disconnect. I sleep in till about 1, then get up and start vesting and nebbing. I eat breakfast next, then do whatever I feel up to around the apartment, my 4 o'clock med gets done, I shower, Andy comes home, we eat again and watch TV or hang out doing our own hobbies. Around 10 or 11, it's treatment time again, midnight is med time again. Andy goes to bed, and I stay up until around 3 or 4. Rinse, repeat.

HERE...I go a little crazy. I depend on other people to bring me the things I need, to allow me to follow my own schedule. I don't mind giving up the control of IV meds...in fact, I relish that. But when it's time for hypertonic saline, and it's not up, or I just want a quick shower and the nurse says no, she's too busy or she feels it's too close to my next med, my head wants to explode.

Earlier this week, I had one of those moments. When my six o'clock med was due, I asked if I could be disconnected after it was through, knowing there was a long lapse in between that med and my next. The nurse said fine, and went away. My med finished, but my IV went on to fluids, and still no one came. I was patient and waited an hour or so before putting on my call light. A new nurse answered, and said she'd ask my assigned nurse. She didn't come back, and neither did my nurse. Call light back on. Same new nurse. I instead asked for the supplies to disconnect myself. Off she went to ask my nurse again. No return. Now angry, I got up and went to the desk. The new nurse said they had no idea where my nurse was. Usually if this happens, the other nurse will check your chart and make their own decision. This one chose to just ignore me standing at the desk, and made no more attempt to find the missing nurse. Since I had now been waiting for two hours for a SHOWER, one the things I feel should just be in the Constitution as a basic right, I was getting angry. Being ignored did NOT help.

I envisioned having a dramatic scene, where I shut off my IV, disconnected it without a flush or heparin, and left the IV pole in the middle of the hallway in front of the desk. Sometimes I wish I had that type of temper. I could never do that (unless the count went up to three hours of waiting, I bet) but oh how I dream of it sometimes.

After about 15 minutes of me standing at the desk, new nurse apparently got sick of me. She went off to investigate, and discovered my original nurse had gone home (she didn't notice she was working with one less person? Geez.) and a new one had taken her place, but was working in another "pod", and would be by to see me soon. I was just incredibly angry that I had to wait, because of a dependence on others that I don't feel, just for something that should be natural- showering, bathing, taking care of yourself.

After this incident, I asked Andy to bring in my own supplies from home. I hoped not to need them, but sometimes you just need a hassle free shower. Today, around 3:30, I NEEDED a shower. I felt gross, I had some "unexpected girlie issues", and I just needed to feel CLEAN. I asked my nurse to let me lock myself, and M (my nurse) hemmed and hawed, because it was a half hour before my 4 o'clock med. I persisted, saying I would be quick and I just really needed it, and she agreed. She left and didn't come back. Ten minutes later, I knew smoke had been blown up my ass, and feeling angry, decided I would just DO it. I disconnected, shoved my pole in the corner, left my supply trash on the bed so the nurse would know, 1) That I wasn't dependent on her and her decisions, and 2) that I had disconnected myself SAFELY. And then I took a 15 minute shower that made me feel wonderful and free.

Weird Transplant Thought of the Day

2008-08-19T01:47:00.000-04:00

I was talking to a nurse about my parents' dog the other day, and somehow I said "Do you think dogs can tell you got a transplant? Like, can they smell the new organs?"

Puppy thoughts: "Why does mommy smell like two people?!"

Watermarking Pictures

2008-08-18T15:07:00.001-04:00

In light of seeing that Gina/Pepe used the photos of a deceased cystic to further her lies, I did want to post a few links for you guys. I have Paintshop Pro and Photoshop, and there are ways to mark your pictures as yours, called "watermarking". It does make the photo a little less enjoyable, but I figure it's a small price to pay to keep someone from stealing your story, your identity, and posing as you. I'm debating whether to use it or not.

Anyway, here's a tutorial to show you how in Paintshop Pro.

Photoshop

If you have neither of those two programs, there is a free download image manipulation program called GIMP. Here is a tutorial for watermarking in GIMP.

*edited to add: A comment from Lisa pointed out that you can do this with flickr, as well.
You can also watermark photos for free in Flickr. Just click on "edit" photo and it will link you to picnik. Click on "Create" and then "Text". Type in what you want and then you can adjust the size, etc.

Hospital Pictures (not of me)

2008-08-17T16:45:00.000-04:00

I wanted to show a few pictures of my hospital life- this is my hospital board, at the end of my bed. I tape up whatever cards I get, and a few things to make me smile. My sister bought me a pop up "kittens" book, I bought myself a Willow Tree figurine with a cat, as I miss mine a lot. I have USA Today's Sports Weekly taped up, because it has Patriots quarterback Tom Brady on the front and I adore the Pats and am a huge Brady fan (no crush- just admire his athletic ability!) but my mom must think I have a Brady crush, because she bought me the new Esquire with him on the cover, too, lol. Also on my board, is a picture a liver doctor drew to illustrate what my shunt surgery did, the before and after. Pretty cool.

This is my parents' puppy, the lovely Miss Holly. You can see my mom in the background, keeping a close eye to make sure Holly doesn't spring from the bed, lol.

Exhausted.

Lastly, this is a card my second cousin George made me- I put the close up in of what is supposed to be my "face", lol. I love it so much.

2008-08-16T14:25:00.000-04:00

I keep wanting to post here...but keep waiting for divine inspiration.

First things first- I don't plan on really addressing the Pepe/Gina/Blake situation here. It's giving too much attention to an attention whore. However, I do want to say, I stand behind Paul and think he was played in the worst possible way in this.

As for me. A little while ago, two weeks ago now, I started having pain in my left side, about where my kidney is. I thought it was a kidney stone, and mentioned it when I went to see a nurse practitioner to get a shot. Long story short, I had a stone, but in the right kidney, not the left, so no one was sure what the left side pain was.

I went to clinic, and my PFTs were lower- I couldn't really blow too hard because I was in pain. I asked to be admitted, and just find out what the stupid pain was. So they admitted me, and drugged me up, and did some testing. The closest they can come up with, is that my spleen is so large from hypersplenism caused by my liver cirrhosis, that it squished something and caused tissue death. If that's the case, not fun. It doesn't seem there is any real treatment for that except pain killers, and waiting for it to go away, especially since it wasn't a definite diagnosis.

In other news, they found out my shunt is still open (yay!) but somewhere along the line, something is resting on the connection, causing the blood not to flow through (boo). It appears, again, there's nothing to do but wait for the transplants. They could do several things, but so far, the risks outweigh the benefits, and most of the things they could do could bring about new problems.

Dr P, my CF doctor, said I could go home whenever I wanted to, since basically I'm on IV meds all the time at home anyway- the only difference here is that I'm on all of them at once, rather than one at a time. The GI team here has had their panties in a twist to do an endoscopy on me now, rather than waiting for the yearly mark in October. So they tried to schedule one for this coming Monday with my usual GI endoscopy guy, but he was booked. they found an opening with another guy on Friday, so Thursday night they came up and said they were doing it then. I signed the paperwork, and began to think about leaving after it was done.

Friday morning, an hour after breakfast was served, and I got none due to being NPO, they come and tell me that they couldn't do the endoscopy, because my platelets are too low. With the hypersplenism, this is NOT NEW. The GI team knew in advance that my platelets are low. But, they couldn't go ahead with the operation without recent bloodwork and blood typing. Which they could have EASILY done on Thursday, when they told me I was getting the operation. But, I could always come back for bloodwork a few days before the operation, and then come back again for it!

I LOVE how according to them it's all so easy. (I note that rather than tell me themselves, they took the coward's way out and sent my resident to take the brunt). I don't drive. It's a long story, but I don't. So Andy or my parents bring me to my appointments. They work! They have to pay for gas! I live 45 minutes away from my hospital! So they gave me the option to go home, or stay here, and get it done NEXT Friday. Freaking idiots. I'm still mad. I wanted it DONE.

I suppose it's a good thing though, as Thursday I started to experience new pain in my left side. Hurts to breathe deep, coughing hurts, and if I press on my left rib in a certain place, it really hurts. Vesting has been out for the past few days. So, back to pain management and the continuation of IVs.

Good things: Andy's mom sent me flowers and chocolates , and made yummy pastries. My parents bring their puppy Holly to visit (I have pictures of her sleeping on the end of my bed that I will post). My 28th birthday is coming up! I will be released before then at least. There is a New England Patriots pre-season game on tomorrow, yay!

Some days are harder than others.

2008-07-28T14:58:00.000-04:00

Lately, I've had pretty watery mucus. While to some, this sounds pretty good, to me it's the worst kind I get. It's harder for me to get up because I can't seem to really get air behind it to push it up. So my usual coughing fits, quickly become harsh, gagging times I can't stand. It happens the most in the morning, when I first wake up and my stomach is empty, so I just dry heave, clinging to my sink, praying for it to stop. Sometimes it ends, and I feel fine for the rest of the day. Other days, it happens through out the day, or I just feel slightly nauseous all day. Either way, I dread that time of day more than almost anything else.

For those who also go through this, I know actually throwing up won't help us on our journey to health- we can't afford to lose any calories to the porcelain god. Sometimes that's the hardest part for me- knowing I can't give in, even if it would help me feel better. I've found that one of the easiest ways to cut vomiting down, is you know when your mouth waters before you're going to throw up? DO NOT swallow that. Your body creates something in your saliva at these times to help make you throw up. If you spit that out, it will cut down on your actual throwing up.

Anyway, since this has started again, it's made me pretty down. Since I'm struggling with it, I find myself more emotional and likely to cry easily. I find fault in things I normally wouldn't care about. I have to remind myself that that is letting the disease win, and I have to try to find ways to make my day continue on, and not focus on the bad beginning. I won't let CF rule my mood if I can help it.

Doctors Appointments

2008-07-17T02:38:00.000-04:00

Today was another Boston day, with an appointment with the transplant team's nutritionist at Mass General, and an appointment with the liver doctor following me at Mass General, but seeing me at Brigham & Women's, haha.

The nutritionist appointment was the last of the required testing it seems! It was about five minutes long. They weighed me and checked my height, asked what a typical day's worth of food is like for me, and then said I'm well nourished, and they would tell the transplant team, haha.

The next appointment, was back across the city at B&W's....we parked our car at B&W's, took the shuttle to Mass Gen, and then took the shuttle back again to B&W. This took less time than we expected it to, so we had about an hour of waiting. I unfortunately have been looking a little pregnant lately because of my swelling. A woman in the waiting room, smiled at me and asked if I was having a boy or a girl. She just looked so nice, and I was tired, so I said "Boy", and tried to look busy. Andy just stared at the golf magazine he was trying to read, and shook his head, which made me struggle not to burst into hysterical laughter. The lady then asked if it was my first, and I just nodded, afraid to speak, and then buried my face next to Andy's looking at the golf magazine. I can't blame the lady. My feet are swollen, I waddle, and my gut is like that of a beached whale.

Anyway, back to the appointment. I LOVE this doctor. She's really nice, willing to answer questions, and makes you feel like she is actually your advocate. She knows about my hearing impairment, and tries to keep up with my status in between visits via email. Really a great, great doctor. Today it was made clear that it's probably not a question anymore of IF they're going to list me, but when- my lung function is still too high. She said that the transplant teams basically just let the surgeons discuss whether they can do the surgery, and it appears they think they can.

Alas, this is fabulous news, but with me, not so good news is always sure to follow. The downside to all of this, is that they realize now my shunts that keep me from re-bleeding like I did 6 years ago, are not working. They are blocked, and blood flow is backing up again. She thinks this is the reason for the massive bloating- it's just my big swollen spleen, backed up with blood. They're waiting to hear from the lung transplant team on how long they think it'll be before I am transplanted- if they think I'm at risk for bleeding before that time, this may be the time to do surgery on me to try to solve the shunt problem. The only options are surgery.

I could either have surgery that re-opens the shunts, or places new shunts, or I could have surgery to remove my spleen. They did say my spleen is so large, that it might get in the way during the transplant, and they might remove it then, anyway. We're going to meet again in two months and discuss. The other maybe option is what they usually do for liver cirrhosis patients with this problem (the patients without lung disease) is beta blockers. The problem is, apparently beta blockers cause bronchospasms, something a lung patient can certainly do without.

And that's the update.

The Darkest Time of My Life

2008-07-01T19:50:00.000-04:00

About 6 years ago was a very dark period in my life. I knew my husband was cheating on me, but at 21, didn't have the tools to really handle it. I was defiant. I wanted to prove the nay-sayers wrong, and so I stayed in that bad marriage, telling myself at least with CF, I wouldn't live forever. The person I am now is horrified at these feelings, but there it is.

I believe the stress of that relationship, sent me into an area of unhealthiness, physically and mentally, that no one should be in. On Mother's Day of that year, I told my husband that it was over, that his cheating was obvious, and I didn't want to be the fool anymore. The next day, my body started bleeding- my liver disease had progressed to the point where veins in my stomach and esophagus burst, and I hemorrhaged. I lost over half the blood in my body, and would need surgery to repair me so I wouldn't bleed again. If I didn't have the surgery, and I chose a treatment course of monthly endoscopies, and pills that would likely make my lungs worse, I had a 95% chance of re-bleeding within a year, and when I re-bled, it would be worse than the first bleed. I would die.

When I was married, I had a cat named Buffy. She was the light of my life, and I stupidly trusted her to the man I married. He told me she died, and my heart broke. I later found out, she was being house sat by one of his friends, and she became ill (she was 17 when I last saw her). Since it wasn't her cat, the friend asked what to do- my still husband, who told me he loved me all the time, told the friend to keep her, or give her to a shelter. He didn't care. Buffy went to a shelter, and by the grace of God, the woman who ran it took a shining to her, and took her home to live out the rest of her life. I found this out two years ago when I took a chance and called them to see if they had any records of her being there. I knew after my divorce not to trust anything he had said, so I cried tears of joy knowing he hadn't hurt her. Not being there with Buffy though, has left a permanent scar on me. I regret my choices with her almost every day, and still miss her.

My parents knew I wanted another cat, but my dad didn't want to adopt another. Before I went into the surgery, my parents bought a stuffed white tiger, and gave it to me- my dad told me this was his promise to me, to let me adopt a kitten when I was out of the hospital again.

I got through the surgery beautifully. I still have a large scar, from between my breasts to about a foot down. During this time, I had a renewed faith in God. The pain I went through with the surgery, almost dying, finally acknowledging that my husband didn't love me, and finding the strength to leave him, could have easily overwhelmed me. Yet it was the strongest I felt ever. It seemed whenever the thoughts got to be too much, I would hear "This too shall pass", and I was able to get through. It felt like it was whispered to me in all my darkest moments. It was obvious, when my favorite nurse from my usual floor came to visit me, that the message was there for me, when I saw around her neck a key chain necklace, with "This too shall pass" on it. I knew God was there for me.

When I went home, I insisted on going to get a kitten almost immediately. So drugged up on oxycontin, with loose clothing on, my parents brought me to a local no kill cat shelter. I was put on the top of their waiting list, in no small part because I realized one of the volunteers was a woman I had worked with when I worked at CVS. Within a week, I had been called to come check out a batch of kittens they had.

I remember kneeling in front of the cage, and these three kittens cowered in the corner, afraid of these people peering at them, afraid of the cage being opened. Then this little gray beauty, with white paws, a white chest, and white on her nose stepped forward, unable to help her curiosity. I picked her up, and named her Chloe. She was the brave one, and obviously her coming forward first signaled to me she was meant for me.

I would swear to you and anyone, that she is one of the biggest factors in me getting my true self back. She is special in ways I can't even describe. She brought back cat love into my life, and brought so much joy to that time of healing. She saved me.

With her brothers. She's on the far left.

Sleeping on me while I recover.

Today.

Radioactive

2008-07-01T00:20:00.000-04:00

I had several tests done today for the transplant teams- bloodwork, 6 minute walk, PFTs, a CT scan of my lungs, and a V/Q scan.

Bloodwork and the 6 minute walk were pretty uneventful. But PFTs, of course, were UP, despite the fact I had a raging headache. Every time I coughed, my head felt like it was going to split open. Yet, instead of the 29% I had the last time I did PFTs, I got a surprise 38%. Perhaps because of my diligence in exercising? I've been using my treadmill 3 times a week, and really pushing myself to improve.

The CT scan was a surprise. It was a CT Scan with dye, but apparently they've added BARIUM to the mix. They made me drink barium before the CT scan of my lungs! They said it's new, and they're trying it to see if they get better results. UGH. Barium is never a good surprise.

The V/Q scan was by far the worst. They put a very tight mask on you, and you begin to feel a little Hannibal Lecter, because they don't want you to miss out on any of the yummy radioactive gas they make you breathe in. I really started to panic, which they told me was not rare, that most of the patients begin to feel like they can't breathe during the test, but that their sats actually improve during it because of the supplemental oxygen, so not to worry. Easier said than done when you feel trapped and can't breathe. It took a lot of willpower to just keep getting through each second, reassuring myself I only had to do it a little longer, rather than what I wanted to do, which was RIP the mask off, and then gasp and scream like a nutcase.

Good times :) At the end, they gave me a card to carry with me if I go to airports or anything, stating I had a nuclear medical study done recently, and that's why I'm emitting small traces of radiation. Awesome! I hope I don't give my cats cancer :(

My Transplant Adventures Thus Far, Pt 2

2008-06-23T16:26:00.000-04:00

April 16, 2008

I had a doctor's appointment today at B&W's with a liver doctor, Dr R. She works both at B&W and Mass General, so she updated me on their status. Still nothing going on, haha. They were waiting for her to come back from her recent maternity leave for their meeting, as she has met with me before. Very nice lady, just like everyone else I've met at M.G.

Interesting bits:
An article was published recently from Germany about double lung/liver transplants. They're more common there than here, so obviously my team was excited to read the article.
One of the things they'll have to discuss, is how to do the operation. There are two ways they can do it, apparently. They can do the lungs and then the liver all at the same time- or, because the lungs only last 4-6 hours outside of the body, and a liver can last up to 12, they can do the lungs, send me out of surgery to stabilize, and then send me BACK after a few hours. I wouldn't wake up (thank god!), but it would give my body a chance to calm down a little, then go through the next grueling surgery.
In other multiple organ surgeries, (I've mentioned this before) the liver protects the other organ. They wonder how to manage my anti-rejection medication because of this- I'm more likely to reject the lungs than the liver, so all eyes will be on that, basically.
In almost all lung transplant surgeries, the patient is given an epidural to deal with the pain. Unfortunately, people with low platelet counts can't get an epidural, as the blood is too thin and they worry about bleeding into the spine, so it's unlikely I'll be able to get one. I worry about the pain factor without an epidural. I do know one person who got a transplant without one, so I'll probably ask them what their experience was.

May 3, 2008

I received a letter from one of the doctors I've been seeing yesterday, and she said that they've chosen a date in mid-May to talk about my case. Booo! I'm glad to know that it's going to happen, but a little sooner would have been nice, right? By the time I actually get listed, I'll be an expert at waiting

There was another reason for the letter. This might be a little long winded explanation wise. With liver cirrhosis, the scar tissue starts to squeeze the liver, making the blood back up, into the stomach and esophagus. The body tries to compensate for the blood back up by creating weak veins called varicies. The varicies can burst and hemorrhage, as happened to me 6-7 years ago. The surgery I had at that time, was to place shunts- shunts create different pathways for the blood to go to, so it doesn't back up and create those varicies.

For the past year, there has been some question as to whether my shunts are still working. It is starting to appear that they've closed over I had an MRI of my liver done, and the tech didn't even MENTION my shunt in the report, so for now we think it's because it's just not working. There are also varicies again in my body, another not good sign. We're not sure what this means for me. If I'm lucky, they can hold off on doing anything, hoping I'll get a transplant before any problems arise from this. If they don't think they can do that, there's going to be some discussion on if there's a way to re-open the clogged shunts, or if they can safely replace them, or any other options they haven't thought of yet. Who knows.

May 6, 2008

Today I was talking to my mom, and she was saying "Don't worry, after transplant, you'll be a whole new woman". To which I said:

"Not a whole new woman- the same woman, and about half of someone else."

It made me giggle madly.

June 2, 2008

Mass General called today! They said they're feeling positive thus far about doing my transplants They had their meeting, but decided they want me to do some tests over (like my PFTs, chest x-ray, 6 minute walk, etc), but as of right now, when the time comes, they think they're going to list me!

When my mom told me I didn't know how to react- it's all felt like a house made of cards. I get afraid to get too hopeful! My friends are psyched, and some part of me is, obviously, but another part of me is so numb and scared they're going to change their mind. I'm cautiously optimistic, and glad that I got a POSITIVE answer!!

*boogies*

They know.

2008-06-20T14:47:00.000-04:00

It's been almost a year since the last time I was hospitalized- getting my port made it possible for me to stay home, unless I'm really sick. Luckily, I've done pretty well so far this year.

However, today I'm going on an overnight trip to visit a friend, and have started packing. One of my cats, Chloe, is looking on thoughtfully. I can tell by her face, she is used to the packing, and hates what it means, or rather what she thinks it means. I thought after a year, she'd have forgotten, but from the look of unhappiness on her little furry face, I guess not. It's too bad we can't explain to them.

My Transplant Adventures Thus Far, Pt 1

2008-06-18T16:45:00.000-04:00

I have written a lot of blogs in various places- livejournal, myspace, and on CF.com. Livejournal is for ME, and me only, myspace, I keep up with my friends, and CF.com is where I unload with other cystics. So it makes sense to put some of those entries in my CF blog, here.

January 24, 2008
I always knew that when it came time, I'd want a new pair of lungs. I think in some ways, cystics are trained to keep going- it's tough, but you just keep doing and going for as long as you can- the next med, the next hospital stay, the next surgery, and try to enjoy all the in between times. So I've always seen transplant as the last step. The top of the mountain, if you will.

My liver problems have stabilized since I had the shunt placements. I still have bleeding problems, where my blood doesn't clot correctly, so I need transfusions when I have surgeries. Sinus surgery was a mess. UGH. But this year, my lungs started to act like crap whenever I was out of the hospital. I'd be out for two weeks, and then have high fevers again. Tylenol was my best friend, and was the only way I was making it through every day. I finally had to get a port, and start IV antibiotics every day. My doctor said it was time to start looking at lung transplantation, even though my lung function was at 40%, because we weren't sure how the liver disease was going to factor in during my evaluation.

Transplant testing, to say the least, is NOT FUN. When you're barely making it huffing and puffing just around your own house, going to a huge hospital, and doing 4-5 tests in a day is hard work. I felt like it was a test of how dedicated I was to doing the best I could to taking care of myself, and sometimes I felt like the testing would never end, or that I'd just lose my mind with the stress.

At the end of transplant testing, I went back to be told the results of my evaluation. The team then said they didn't feel comfortable with me not having seen a liver specialist from their staff, and that they wouldn't think about listing me till I did. I started testing in March, and was told this in June. I was so ANGRY that it wasn't over, that I wasn't being listed- the first thing they were told about me was that I was also a liver patient, which is why I was sent for transplant testing early, and they chose to ignore that until after their cookie cutter evaluation was over. It didn't make sense, and still doesn't. Knowing what they did, they should have done those tests along with the regular evaluation. But they didn't, and so I did that part over the summer. In August, I was scheduled for sinus surgery as part of my transplant work up.

I was scared of sinus surgery. The idea of someone digging with metal tools in my nose freaked me out, and I couldn't imagine the pain factor (yet I'm all "CUT ME OPEN AND GIVE ME NEW LUNGS, YEE HAW!!"). The day before the surgery, the transplant staff called and said the conclusion was that I'd need a liver transplant as well, and that they couldn't do that, as they didn't have a liver transplant clinic. Case closed.

And so ended that- the transplant team came to see me when I was recovering from the sinus surgery. I woke up to my mom fighting with them, trying to get them to at least have me see their liver specialist before making that decision. They agreed to start helping me find another hospital. Since I had a pre-existing relationship with Children's, because of the liver transplant evaluations I'd had there, they were my next hospital.

They were excited about the prospect of working on me- there hasn't been a double lung transplant combined with a liver done in Massachusetts before. If I get it done here, I'll be the first. There was one double lung transplant done at Mass General, where the liver failed soon after, and the patient then received a liver, but that's the closest so far. Boston Children's has to had deny me now as well, as they don't have Medicare coverage, except in their kidney transplant clinic, and well, that's one of the few organs I don't need :)

So now I'm going to try Mass General. If this doesn't work either, I'll have to leave my beautiful New England, and go to Pittsburgh. I've been dealing with transplant since January, and I'm relieved to say even though this is hard, it got easier. It'll get hard again, I know, when I actual do list, and feel afraid and excited every time the phone rings, but I'm looking forward to that- it'll be better than the constant fear that this waiting is going to go on for too long, and I won't be listed in time, or the fear that I'm not going to end up at the "right" hospital.

February 23, 2008
So I have my first appointment with Mass General's lung transplant team in March. That'll make it a full year I've been pursuing a transplant. Little over, if you count the time I spent waiting for my first appointment with my very first hospital, way back when...*sniffs*

I'm not sure how I think things will go. I feel used to feeling like THIS will be the hospital that lists me, and then I get told for some reason, it's not going to work out. So I'm just going with just about no expectations.

What scares me, and I finally told another CFer the other day, is I'm terrified they're going to make me do another full evaluation. It frightens me, because I was so tired out and wrung out by the last one, that I can't picture doing another one, with the possibility of having to move out of state and do yet ANOTHER after that if this hospital also says no. It makes me question my own strength, if I can really handle a transplant, period. If I'm not dedicated enough to do as many evaluations as are needed, am I deserving?

I try to look at it objectively- if Mass General makes me, it will be my fifth evaluation, ever. I had 3 for a liver transplant growing up, (was never listed) and had one for Brigham and Women's. I'll take it hard if Mass General tells me I have to do it all again for their records, but I feel I'll force myself through it. It's just leading up to it that's hard. You can't prepare yourself for the unknown, and the unknown is more frightening than anything else (hence, the quote at the bottom of my page). Somehow, I'll force myself to do what they want, IF that's what they want, hopefully not too much at the expense of my energy.

March 25, 2008
We drove to Brigham & Women's, because my parents are having a hard time figuring out how to get to Mass General. There's a shuttle that runs between the two. We got to B&W, got out, asked how to get to the shuttle, went back out, and crossed the street to the bus shack. We watched two shuttles drop people off, and refuse to pick people up, before another one came and allowed us on, haha.

We got to Mass General. It seems small, and crowded, but it takes forever to get anywhere, so it's not small. I had to go in between two buildings all day, the main building, and Yawkey (hehe, I laughed internally thinking about Yorkie puppies whenever I had to go to Yawkey).

Social Worker: Very nice lady. Was genuinely happy and excited or sad and feeling, when appropriate. We talked a bit about adoption as she and her husband had adopted a few children themselves. An interesting change from B&W- they ask for a picture of the patient, so when they meet to discuss them for transplant, they know who they're talking about. I found that to be an interesting personalization- they're not just talking about a name on a medical record.
Psychiatrist- Again, completely nice and friendly. Such a change from the woman I had to see at B&W! Very easy to talk to. Said she admired me after she was done talking to me.
Head of the lung transplant program- Very nice, smart guy. Was totally willing to talk to me as a HUMAN. The gist of it is, they're not sure they're going to accept me, or even how it would work if they did at this time. I asked him, considering the transplant paper work said they usually deny those with serious liver disease, why they're making an exception and considering me. He said it's because every once in awhile, a patient like myself, challenges them to look at what they're currently doing, and decide if it's time to broaden what they do. He's not sure how dual listing for a double lung and liver transplant would work, but he assumes from other multiple organ listings, that the organ that's worse takes precedence on the list. So, my lungs would dictate where I am on the lung transplant list, and when I would get the lungs, the liver from that person would just follow the lungs.
He said it's going to take time, as they need to discuss things with the liver transplant team, and as both are very busy, it will take awhile for them to all get in the same room. He said to call the tx coordinator often to find out what the status is, to make sure they don't forget me.
Liver transplant surgeon- Holy crap, this guy cracked me up. Obviously a smart man, he has a distinct German accent, and a sense of humor. He has no problem doing my surgery. His view seems to be more let the lung people do their thing, he'll do his, it'll be magic, haha. He said a few interesting things as well- that in surgeries with the liver, and another organ, such as pancreas, kidney, etc- it's been the nature of the liver to sort of protect that organ, so he thinks it'll work the same way with lungs. He says the liver will add on about 4 hours to the transplant surgery. When I said "So at least 10 hours?" He said "Don't worry. You'll be asleep."
He mentioned that a normal person has about 300, 000 platelets in their blood stream at any time to help them clot. He said the last blood test he has in their system for me, I had about 50,000. My spleen, being enlarged, just gobbles them up, which is not new to me. When I bleed, my spleen releases a few more to help me clot. Post surgery, despite the new healthy liver, I'll probably still only go up to 150,000, but that's definitely a big improvement over now.
So in conclusion, I had a pretty good day. It wasn't a yes, that they'll do the surgery, but it was definitely a step forward. I liked the hospital, and while I felt overwhelmed, I didn't feel like these people were working against, rather than with me, or for me.

The Parents God Gave Me

2008-06-18T16:39:00.000-04:00

When I was born, I was born to two 18 year olds. My biological mother gave me up for adoption through Catholic Charities. I spent two months in foster care, before "meeting" my parents, Patrick and Dorothy.

Mom and Dad had been told that they couldn't have their own biological children, so they decided to adopt. They first adopted my sister JoAnn, and they then went back on the waiting list to adopt another child. They had to wait for 9 years before they got a phone call saying that I was available.

They came to see me- back then, I don't know how it is now, but you met the child first to see if you wanted to proceed, if you thought they'd fit into your family. I was 2 months old, and Mom and Dad tell me that I didn't shut up the whole time, that I chattered away to them. Dad said I was very tiny, and when he sat me on his lap, and asked me if I'd like to go across the street for a burger, I shat on him. Clearly, I was a vegetarian even then, haha (I only eat meat now for weight gain). They loved me from the moment they saw me, and took me home not too long after.

My papers said that I was "healthy", but it was pretty obvious to my parents that I was sick- the amount I was pooping, and how small I was was a pretty big tip off. But I went undiagnosed until I was 2 and a half years old. My parents say, that in a way, that was a miracle. It doesn't take much of a stretch of the imagination to see what might have happened if I had been diagnosed at birth, or before my parents had met me. My parents, in hindsight, are relieved that they didn't know- they wanted a healthy baby, and are thrilled with their not healthy baby :)

I am so grateful to God that He knew where to place me. If I did not have the parents I have, I don't know what would have happened to me. It's all such a crapshoot- at least that's how it feels sometimes! I was, and am, so lucky.

The judge who oversaw the adoption proceeding, me, my sister, my mom, and the lawyer (Dad was taking the picture!)

My parents today.

Transplant Prayers!

2008-04-02T16:17:00.000-04:00

Today, we're praying for Tricia and Nate- this is transplant call number 2, and we're keeping our clubbed fingers and toes crossed that this is the one. Like all have mentioned, what a great birthday gift that would be for Nate!

Hello

2008-02-05T01:20:00.001-05:00

I'm a 27 year old New Englander. I LOVE New England, and adore the changes in the seasons. I lived in California for a year once, and it wasn't me. My whole story sounds like a soap opera, when I write it out, but it's just what it took to make me myself, and I'm proud of it all.

I was adopted when I was 2 months old- my biological parents were two 18 year olds, who gave me to Catholic Charities. My REAL parents, met me when I was 2 months old, and then legally adopted me a year later. They are AWESOME. I've given them a lot of heartache, not just with CF, but because of bad choices I made when I was younger, yet they still knew I'd turn out all right. They've stuck by me, and are some of my very best friends in the world now (and always were, even when I was too stupid to realize it).

I was diagnosed with cystic fibrosis when I was 2 and a half. My parents were told I'd probably not live past the age of 16, and here I am, at 27. At the age of 5, I was diagnosed with having hearing loss, not connected to the cystic fibrosis, and was fitted with hearing aids. I was only hospitalized a few times as a kid- once at 7, again at 8, and then not again till I was 12. When I was 14, I was diagnosed with liver cirrhosis, after having quite a few massive hemoptysis episodes, and one doctor misheard it was I vomited blood. Had it not been for that mistake, I would have gone undiagnosed with liver disease for quite some time. I was immediately sent to Boston to undergo transplant testing for a liver, where they determined I wasn't nearly sick enough. This was my first transplant evaluation.

When I was 15, I was diagnosed with diabetes. At 17, I was admitted to the hospital again for lung infection, and that time it seemed to "stick". I went into the hospital every 3 months after that, basically. IV Tobramycin cost me more of my hearing, and I now wear deep inner ear canal hearing aids, and I've learned to lip read.

At 19, I married shortly after graduating high school. He was in the Marine Corps, and that's why I left my beloved New England and went to California. I became severely depressed out there, a combination of missing family and friends, and being in a bad relationship. When I went home, I was severely underweight, when I had not been before moving, my lungs were badly beaten up from infection after infection, and my liver wasn't doing so great either. I went back to New England, and started transplant testing again. I was about to be listed by a children's hospital, when the military announced they wouldn't pay for the transplant if it was done there. They chose a hospital in Maryland. I had to get a case worker to fight to be transplanted near home. They chose a hospital in Boston, Lahey Clinic, and I went through another evaluation there, where they said I wasn't sick enough for a transplant, and even if I was, the smart choice would be to get a double lung/liver transplant, as they suspected if I did just the liver transplant, I would die from pnuemonia soon after.

At 22, I divorced my ex-husband. The day after I told him I was divorcing him, my liver cirrhosis caused me to internally hemorrhage. I lost more than half the blood in my body, and needed to have two shunts placed to keep the blood flowing in a healthy way.

At 23, I started dating a guy I'd known in high school, Andy. We knew fairly quickly that we were meant to be together. We've never had it easy- our first year alone, both my grandmothers died, and lung transplant was suggested to me for the first time, but was dismissed when my lung function happily rebounded- but we've always been happy and laughing. We're very lucky, and this past four years, although hard, have been some of the happiest for me. I have good family, good love, and good friends. We got engaged this year, and started all the transplant testing junk, which will be a separate, long entry in itself.

The only other important information to know about me (CF wise) is that I have a port now, and do IV meds every day.

Important information to know about me in general? I have two cats that I'm all obsessed with- I'm not a crazy cat lady, but sometimes I've been known to come close to that furry line that separates crazy cat ladies, and not crazy cat ladies. They're named Chloe and Izzy. My parents own a Shih Tzu, named Holly, who I consider to be my dog as well, and she visits me in the hospital. I watch a lot of TV, spend a lot of time on the internet, and love to knit and crochet. I used to be a voracious reader, but have slowed down- now I just read a few chapters before bed time.