Jess's Journeys

Last blog

2011-08-15T21:31:00.002-04:00

I just wanted everyone to know I'm doing well and I will not be blogging anymore because I am in the process of transitioning my blog into a book, as a memory book really because I will be deleting this soon. If anyone would like a copy of the book, let me know because I plan on ordering maybe 10-15, depending on if people outside my family are interested in it. Thanks! I will continue to try to follow all your blogs. :)

My Blog

2011-06-26T21:32:00.001-04:00

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Happy Father's Day!

2011-06-19T20:06:00.001-04:00

Taking it easy this afternoon/evening as I went flying with my best friend this morning. He just got his pilot's license so we flew in a very small Cessna. It was awesome! Can scratch that off my bucket list. :) I love making memories.

A Continuing Patient

2011-06-13T18:10:00.002-04:00

When I received my transplant last year, I guess a big part of me was ignorant. I believed that having my lungs replaced would
"fix" my body and things would just FALL into place the rest of my life. People always say, transplant is just a whole new disease. And it is. My stomach and pancreas have taken the brunt of damage from a surgery that I NEEDED. And that should have had no real negative consequences on the rest of my body.

Well. My chronic/acute pancreatitis hit me hard last month. I couldn't walk Great Strides although my amazing Breathe Team did. Thank you guys! We raised about $400! I was stuck in the car vomitting and in pain. I was more upset that I couldn't walk GS than the fact that my pain had come back. It was my body not living up to what I expected it to be since transplant. I went to the ER that night and 2 times since. Flew to Duke last week for them to tell me there are no more therapeutic options for my pancreas. Pain management is my only option. So today I was referred to a pain specialist who is likely to put me on low dose narcotics for life. I will see him next week.

Massages that I get twice a month give me good reprieve when I need it. Ice packs and heating pads are lifelines. My gastroparesis is still horrid, in that my stomach empties only 3% after 90 minutes. The dr at Duke has not seen worse. This could also be adding to the pain I experience. I am fed primarily through my J tube. This surprisingly doesn't bother me much anymore. I have little interest in food. And when I do, it is because my pain is under control and this is a rare occurrence.

If I knew then what I know now, I wonder what would be different.

I still love my life. I'm still trying not to let these things depress me. I can breathe! But I need narcotics. I'm hardly immunosupressed which is great, because I think I have had maybe one cold since my tx 14 months ago. I'm also trying not to take things for granted. I'm lucky to be here.

Life is a Curveball, Try to hit it anyway

2011-05-31T19:58:00.006-04:00

Update on things:

Right now, the pancreatitis is back. I haven't been able to eat, will be at Duke last week of June. May need some intervention then.

Working on my Internship. It is called the "Child Born in 2011" Initiative having to do with climate change and the world we live in.

I didn't end up getting scuba certified, I had found way too many people saying BAD IDEA and I believe them. There's plenty of other things for me to do anyway. Love Groupon, get 4 seperate horseback riding experiences. Will schedule soon.

Lately, I've been trying to bike almost 3 miles a day. It's tough with pain like this. I would like to attend the CF CYCLE for Life here in the SW Florida chapter in late October, but am going to need to train and fundraise like crazy so I don't know yet. Plus the minimum ride is like 25 miles!

Studying fo the GRE later this month. WIsh me luck, its a difficult test.

Other than that, family is doing fine. Will leave you with some pictures.

My Skydive Video

2011-05-15T18:11:00.002-04:00

...and now for your enjoyment...Click Below

http://www.youtube.com/watch?v=Ac6aeJtZ9G0

Yes, it was amazing. The most amazing thing I have ever experienced. Transplant was amazing too, but in a different way.
Yes, I was terrified. For most of the free fall I was screaming because it was just so wild.
Yes, I'd do it again if the $ is right.

Loved it.

Diving

2011-05-13T20:12:00.003-04:00

I'm constantly being amazed at what I can do. I'm so happy right now. My team for Great Strides is finally coming together. Remember, if you'd like to walk (preferred) or donate to my walk if you can't walk this year, please visit the link below!

Jess's Breathe Team!

And So it Begins

2011-05-02T20:27:00.002-04:00

I have finished my spring semester! I made it through only missing one week of classes back in jan/feb due to continuing stomach problems. But I've been so well! I'm taking risks, safe risks. Like skydiving. Sarah and I are going skydiving in one week. I'm so excited! Then I start my SCUBA certification, and my possible internship. And I'm thinking about trying to plan some trips. I'll be back at Duke for like 3 days at the end of June. It will be weird not to have a bronch, but I'm now at yearly bronchs unless my numbers show some decline.

I really really want to stress how badly I would like people to walk with me on May 21st at 5:30 pm. It's a Lowry Park! Which is awesome and you don't have to worry about getting up early since its an evening walk.

http://www.cff.org/Great_Strides/JessicaNewport

I'm so thrilled to be here. :)

Walkers, Please!!!!

2011-04-21T19:14:00.002-04:00

I'm going to be walking Great Strides this year since I'm actually able too. I think the last time I walked was 4 years ago and it was tough. But this walk is going to be fun, its at Lowry Park Zoo at 530 in the afternoon on May 21st (Saturday). What's even better than that is that you dont have to donate to walk with me. Just join my team or donate at http://www.cff.org/great_strides/ and my team name is Jess's Breathe Team. Pwez? Thanks for signing up!

Great Strides Tampa Bay

Happy 1st Transplantiversary!

2011-04-18T19:59:00.002-04:00

Tired but Grateful

2011-04-16T22:03:00.002-04:00

I've had a pretty tiring two weeks. Classes have kept me busy. I find out Tues if I got that environmental internship I wanted. I want to get SCUBA certified, skydive, maybe finish my tattoo, all in the next few weeks. I am two days away from both the greatest and hardest day of my life. My double lung transplant last year, April 18th 2010, one year ago. I am blow away, amazed, and especially saddened that people are grieving for a loved one this week.

I've gotten the chance to really get outside and work out. I'm biking more often and at higher speeds. I read somewhere that standing-cycling through have the ride gives you a better workout. And I feel it! I walked at least 2 miles last Friday for Relay for Life and walked 1 mile yesterday at the park and walked around at the Renaissance Festival today. It was a lot of fun. I'm not complaining too much about being busy, this time last year I was laying around strapped to oxygen so this is just amazing.

On Monday, my transplantiversary, I plan on letting some green balloons go for my donor. Will try to flip-cam it so I can post it later. Yay for organ donation!!!!

Busy Bee

2011-04-12T21:29:00.005-04:00

Pictures from Relay, Sarah's roommates puppy, and my and my doggie friend tonight.
Thinking about how this was the last week of my donor's life, one year ago.
Amazing how things have changed.

April- Donate Life!

2011-04-07T14:41:00.003-04:00

Here's the thing:

I wouldn't be here if people didn't sign up to become organ donors. My life continues because of this amazing gift. I cannot yet put into words how grateful I am to my donor and their family. I hope that someday I can write them and tell them what an amazing life I am living because of them. In a few weeks, I will have one year under my belt. I hope that I can both celebrate life, and give thanks to those that think of others. Happy Organ Donation Awareness Month!

Be someone's Hero!

Asleep at the Wheel

2011-03-30T14:07:00.002-04:00

As I begin to really navigate this world with my new lungs, I encounter new obstacles or lack there of. New behaviors, new reactions. Like Tori said recently in her blog, her nails are no longer blue so she doesn't have to cover them with nail polish.

I guess what I wanted to say is that I have encountered a small problem that I am thankful to have. In the past I would have to get up and spend hours doing treatments and preparing for the day as a "typical" CFer. Now, I practically roll out of bed into my car to drive to class. The problem with this is I find myself waking up AS I'm driving, which can be pretty dangerous. So I blast my music and have some sugar to try to keep me from driving poorly.

It's the little things.

Good News Late in telling

2011-03-23T22:57:00.002-04:00

I've been back home for awhile now and just kind of forgot to update my readers. I had no infection/rejection with my bronch, so I don't have to come back until June! And I don't need a bronch again for one year! Hitting the one year mark is amazing. It's crazy to look back one year, even two years ago when I was just beginning to go through transplant evaluation at Shands. My actual 1 yr isn't til April 18 but I told my dr, sorry, dont want to be here next month. He wants me to exercise, go to the gym and meet guys. Seriously, he told me that. Gyms are so yucky though, I really don't know about all that. But I have started using my at home spirometer again to try to increase my lung capacity further.

Classes are going splendid and I may be able to graduate this summer! Oh, what to do, what to do. I want to travel! This summer if I can fit it in, or this fall. Destinations; west coast, Greece, Australian. I'm all in.

I can't stop thinking about my blog friend Bree, going through a rough time right now, she's 1.5 yrs out of transplant and has encountered some horrific side effects or something. No ones really sure. I'm very sad for her. Love ya babe!

Until next post, hope you all are enjoying the beginning for spring.

200th post

2011-03-17T19:22:00.002-04:00

Breathing a sigh of relief that my 3 days of appts are done. I'm hoping to hear my bronch results back friday so I can pull my PICC line. Has anyone else ever pulled theres on their own? Mine's been in over 3 months.

I want to shout out my positive thoughts and juju to Kerry and Justine, who are both having a hard time recovering. And to Gary and Chantelle and all those waiting for the perfect pair. It brings me back to this time last year when I was just listed and so optimistic about lungs for me. Although I've had some troubles in my recovery, its almost one year and I'm looking up.

Happy Transplantiversary to Stephanie who I got to meet on my Maine vacation last Sept!

No, YOU don't understand

2011-03-14T19:10:00.003-04:00

Today my mom and I went to see a pain specialist about how to deal with my pancreatitis pain, gastroparesis pain, back pain, etc. that I've been dealing with on and off since my transplant almost 11 months ago. After waiting 3 hours at the office, we finally met the dr. I knew from the moment we stepped in the office that this man was not going to help me. I don't currently have any flair up of pain (which is great) so perhaps I would have made a better impression dragging a pain and drug-addled body in there. Instead of some kind of plan for when I do experience pain, I get referred back to my GI dr in Tampa and suggested to see a MEDICAL psychologist. Did anybody even know that there was a difference if "medical" was put before psychologist??? This man tells me that I am early in the disease process. And that I do not have chronic pain. Um, WHAT? I've had CF for 24 years and Transplant related complications since last April. You don't tell me that I don't know how to cope, and then suggest I see more psych (BS) drs to "talk" about how I feel and how I cope and deal.

What a waste of an afternoon. And the chairs in the waiting room have hurt my back. So thanks for the pain, "pain guy".

New Look

2011-03-01T16:52:00.002-05:00

Something that a lot of people don't realize is how harsh the immunosuppressant drugs we are on are. Plus, add on all the anti-reflux, calcium, magnesium, iron, potassium, ADEKS, etc. They can have all these synergistic effects, many of them make other effects. Since my transplant, I have noticed a lot of hair in my brush everytime I brush my hair. Only recently have I actually noticed little bald places. Thus, I am finding new ways to wear my hair, and covering it up is one of my options. I like the head scarf. My ponytail is still visible but my scalp is mostly hidden. I'm trying to embrace this. I've read that it is common and temporary. So until then, I'm dealing with it. Hear that hair?! I DONT CARE!!!

Transplant Album

2011-02-27T15:59:00.002-05:00

Today I made my transplant album. I was hoping it would bring me some good juju and life my spirits a bit. It seems to have worked I'm very proud of it. I wish I had more pages to fill for after transplant but its completely full!

I guess I should mention how I've been feeling. The pain I had after my ERCP has subsided. Took long enough! I still have lower abdominal pain and sometimes pain under my ribs and across my sternum but its not holding me back as much as it used to. Unfortunatly, I have not eaten anything for over a month. I'm relying on my J tube at night for all my nutrition. I am drinking things besides water but not enough to really keep hydrating so we add water to my feeds. I don't know if I have enough confidence yet to try small meals. I feel like my stomach is going to flip flop and then it'll all come back to chronic pancreatitis again and I'll start vomiting at every little thing. I have read that some people with gastroparesis jsut don't eat. I don't want to be one of those people. I'll be back up to Duke the 12th of March for a week. YAY spring break.

I need to get out more. But its so much easier staying in.

Acceptance isn't so easy

2011-02-17T14:40:00.002-05:00

Sorry it has been awhile. I've had some major pain and nausea issues since my ERCP last Friday. The dr went in and cleared my bile duct of debris, there were leftover gallstones and had to make an incision to open the duct a little more. While it wasn't painful at the time (thanks dilaudid!), my stomach/right side hurt the next day and has continued. I think its getting better because I'm able to handle it without so much narcotics. We are all hoping that the procedure will help me, and like I said, it could be weeks before I feel different.

The other side of the coin may be that this is just going to be how my life is from this point on. That I will have to rely on tube feeds, or avoid certain foods, or be on pain meds constantly in order for me to get what I want accomplished in life. I made it to every class this week and I'm actually able to hold down liquids now so its a start. We are definetly going to look into chiropractors, acupuncture, and massage to see if that will help contribute to me feeling more normal. Too afraid to try food yet though I did have some cheetos last night.

We'll see how things progress over the next few weeks and if its bad news, I'll go back up to Duke mid-March. Other than that, I've been studying and reading and watching netflix. Breathe Easy, Lauren. I made her a crane as part of my memorial yesterday. She was a spunky little lady who loved her jewelry. Will be missed.

Another Day, another doctor

2011-02-09T16:21:00.002-05:00

So I feel I owe an explanation of what has been happening since I've been back to Durham. I had a follow-up bronch last week (NO REJECTION!) and saw my GI dr about my pain and nausea issues. She referred me to a biliary doctor. I didn't even know such a dr existed! They deal with the pancreas. All CFers have some degree of pancreatic disease which makes my case pretty complicated. But they think they may be able to help. Tommorow I'm set to have an EUS, or endoscopic ultrasound where they will sedate me and take pictures of my pancreas to determine what they can do to help me. THen Friday, they will sedate me and do those things with an ERCP. Things they can do would be; remove scar tissue, open up the bile duct by stenting, drain cysts (they know for sure that I have at least one). So we're all hoping they do find something they can improve so that I can at least live with less pain/nausea/vomiting. Damn chronic pancreatitis. There's really no cure-all.

So I'm trying to keep my hopes up. But ERCP is usually not as successful as other procedures.

I Did have Hope

2011-01-30T14:59:00.002-05:00

AFter this past Duke hospitalization I had about 2.5 weeks of feeling great. Breathing great, going to school, dating, hanging with friends, seeing movies. Normal stuff. 2 wks ago, my symptoms (mostly nausea and pain) are back. So maybe the gallbladder removal didn't help. I've taken 3 doses of domperidon (Motilium) which is a Canadian drug used for patients with GP (gastroparesis). I'm hoping this helps because I don't have much left to go on. There is a study about pacemakers for the stomach but I'd rather not have to have more surgery, more healing, more hospital at all. My college semester is in limbo which upsets me greatly. I'm going back up to Duke on Weds for a follow-up bronch from my Dec rejection episode and we're hoping they'll have a new plan. I noticed that some people had nausea/vomiting intensely until they were switched from Prograf to Cyclsporin. Could it be my CF-destroyed pancreas? I'm pretty down about it.

I'm grasping at the ends of hope here. I thought this was all over with.

2011 Cranes for CF

2011-01-24T19:15:00.003-05:00

Despite the recurring pain/nausea I am still having I have taken to heart all the losses to the community lately and decided to continue making cranes. I have a mini memorial set up on my bookshelf that I light with fake tea lights each night. If anyone knows of anyone who has lost someone to CF or lung tx THIS year (2011) please email me their names and I will add them.

At the end of the year Im going to string each crane to a balloon and let them free. My email is jnewport@mail.usf.edu.

9 months!

2011-01-18T16:29:00.002-05:00

Happy 9 months to my new lungs! Please no more rejection this year. Though I've been pretty happy with you so far.

That lovely puppy is my friend's beagle, Lainey! She's adorable

My T-shirt Quilt

2011-01-15T15:33:00.003-05:00

I can't remember (sry) who asked about my new quilt but here it is! Definetly coolest xmas gift.

There's a Future

2011-01-14T14:35:00.003-05:00

The last week I have been walking around campus, without aid of a walker or oxygen. It feels so strange and so amazing. I'm a college student again. This time last year I was moving to Gainesville to be closer to my transplant center. All I could see in my future was transplant. Every morning, I'd wake up, do my VEST and nebulizers, eat my breakfast, slowly get dressed/bathed. That in itself would take me probably 3 hours. Afterwards, I'd sit or laydown exhausted from the routine.

There IS actually a future for me. I'm starting to see that now and it makes me smile. I'm studying, driving, hanging with friends, dating. Planning! I'm looking ahead to the summer when I may go out state for an internship and spring break where I really want to go on a cruise. My whole way of thinking has changed over the past almost 9 months since tx. I'm finally feeing positive about a future. That there WILL be one, and it could be amazing.

I feel kind of normal.

Grateful

2011-01-09T14:39:00.003-05:00

I'm grateful for many things today. Since my tx, I've gone through some serious depressions and some moments where I just thought, "Why did I go through tx?". At some point I think most post-txers do. But today I'm looking back on the last year and I guess I'm just glad to be ok TODAY. I'm glad I'm only hooked up to my quietly running feeding tube, and that my PICC isn't being used. I'm glad I only had one episode of A1 rejection. I'm happy to just be lying in my bed with my new t-shirt quilt and the dog snoozing on the floor. I take it as an accomplishment to get dressed, but today I'm happy in my PJs. I'm excited to start college courses tomrw and even more excited to have the oppurtunity to see friends that I haven't seen in over a month.

I've had some really down days. But I've had a few good ones too. I'm grateful for my donor and the family today. I haven't normally mentioned them because I've had so many emotions going on, but I really am grateful for them. I would not be here if it wasn't for their kindness. I miss Courtney and Eva and now, Geneva. They have all left a handprint on my heart. I made cranes for Tiffany and Geneva and "lit" a flameless candle last night. I also want to reach out to Skye and her family, I have a feeding tube backpack too! We are years apart, but our hearts are close.

Grateful.

Happy Christmas

2011-01-05T21:42:00.002-05:00

It will finally be Christmas/New Years for me tomrow. I'm flying home to Tampa. I got out of the hospital a week ago, my weight is up, my feeding tube is healing, and I'm kind of ready to get out of 40 degree weather everyday. I love NC, I really do, its my home away from home. But I really want to get back to Tampa and start my classes next week. My clinic appointment went well Tuesday, my lung function is over 76% capacity now, even with the slight rejection episode I've had this time around. I don't really know how much good my gallbladder surgery has had but I was so weak, I need to be in the hospital to at least get this feeding tube in.

I'm excited and scared to go home tomrw. There's so much to do when I get back. I have a stack of cards and letters and presents to open. Some shipping to do. And prepare for classes Monday. Wish me luck and a better luck with my health! Happy 2011!

2010-12-30T20:53:00.002-05:00

I'm out of the hospital! Back at the Residence Inn, gonna stay in Durham for the week to make sure things seem to improve with me. There's still snow on the ground my xmas, this makes me so excited, will have to take some photos. My feeding tube site is rather sore but I can't even feel my GB incisions. I'm not back up to 100%, maybe running at 60% right now. I'm glad to be out of the hospital after 3.5 wks. My mom and I are going to have an easy new years and try to stay up late to watch Kathy Griffin and Anderson Cooper, they're a hoot. Appt next wk then I should be back in Tampa on Thursday, fingers crossed, higher spirits hear my call.

I did culture A1 rejection which is the most common and most treatable form of rejection in the lungs. So its really nothing to worry about, but it IS my first episode of rejection. I wish I could have none at all! Oh well, take the good with the bad. Hope everyone had a nice Christmas and continue on into the New Years

Jess

2nd Xmas

2010-12-23T21:43:00.002-05:00

So this will be my 2nd Christmas in a row in the hospital. Last year I was on oxygen at Shands. This year, I'm recovering from getting my gallbladder removed and feeding tube put in. I'm having pain and am frustrated with my doctors because they expect too much from me. Not too much else going on. Hoping to be back in Tampa soon so I can start classes with everyone else on the 10th.

In Limbo

2010-12-19T21:18:00.002-05:00

Hi everyone, sorry I havent posted in awhile. There really hasn't been anything important to report. I'm still at Duke, been 2 weeks now. The drs still don't know why I'm so nauseous and in pain. The nausea sticks around like my shadow, following me no matter what meds they give me. Either Tues or Thurs I'm getting a J tube placed to feed me since I have no appetite/desire to eat. While they do the procedure, they may take out my gallbladder if it looks bad. Right now I've still got a temporary feeding tube in my nose.

I really wish I was home in Tampa for Christmas. I feel like last Christmas was hard enough being in hospital, but now when I can actually breathe, my digestive system keeps me down. I love this time of year, next Christmas has to be the best. Thank you all for the Christmas cards! I have them up in the room along with the origami snowflakes.

An update

2010-12-11T18:31:00.002-05:00

Not much of one though. I'm still in Duke hospital, the gallbladder is still on the table. But I have all these other stomach issues like the usual gastroparesis, and some fungus in my esophagus as well as a lot of acid in my stomach and esophagus. Not to mention the colitis in my intestines. But finally, my usual dr came in this morning and got things moving. Im now the proud owner (not) of a temporary feeding tube since my weight is around 100 pounds (can't remember the last time I saw that number) and a PICC line that was put in with no problem.

I've been trying to keep myself distracted by music mostly. Also, making origami snowflakes and reading trashy mags. I hope everyone is having a cheerful holiday. It's hard to get into the spirit like this.

Drs, nurses, friends, family keep telling me to be strong, hold on, itll get better. But I've been dealing with these various problems on and off since tx. I would rather go through another transplant than deal with this pain and suffering anymore. Welcome to the dark side of tx.

CF Flash Mob

2010-12-07T19:26:00.002-05:00

I dont know if this idea has been floated around before but with all the flash mob phenoms; Why not do one or two or hundred for CF Awareness or even organ donation. Pick a place like the Mall of America with a lot of traffic. Cfers and their families and friends could all wear surgical masks with "CF" written on it (this would eliminate cross-contamination). And then one person would start coughing, and more would start coughing until the whole crowd is coughing. Even us transplanted or healthy can force out some coughs. And then try to get like a minute of coughing.

A more sinsiter approach would be to have people gradually collapse to the ground after coughing. Or each mask could have some statistics on it, like "35,000 CFers and counting". Or "CF kills, donate life!" or "9 people die waiting for new lungs everyday". It doesn't have to be that serious. But maybe something like CysticLife could sponsor it and get the word out and choose a "leader" to start the coughing. I was just thinking as I sit here in the hospital.

On a more personal note, the surgeons do not want to take my gallbladder out yet. So more pain and nausea is in my future. They want to wait. Wait for what, I ask. Wait for me to keep wasting away and get to 100 pounds? My weight is below what it was after my transplant. This is scary, I am scared. I've got to find distractions.

Jess

Dukeness

2010-12-06T19:56:00.002-05:00

Ive been in house about 3 days now. Still in pain, nausea vomitting. Everything seems to point to the gallbladder but I'm going to have a higascan tomroww to chk that out further. I have breif moments like now where i feel good enough to call people and update this. Hope evryone is enjoying the season. IT SNOWED on our way in from Tampa, it was awesome. Seems like its one hour at a time right now.

I am NOT ok

2010-12-03T18:58:00.002-05:00

Things arent going well for me. My stomach issues have come back and Duke has suggested we pack our bags and come up there for a couple weeks. I can't even go into how much trouble this causes but I need relief. I cant live like this. You can still send Christmas cards to my home address, my dad will ship us mail and such occasionally. I havent the heart to talk about it anymore.

Thanksgiving

2010-11-26T15:20:00.002-05:00

Thankfully, I was able to make it back from Durham this past week then we all packed up again to head to Cocoa Beach for a Thanksgiving Reunion there. It was fun to see everyone and for some people to put a face to the name. Many had heard or read my blog so I was pleasantly surprised.

So far I've been eating small amounts and doing fine with that. My arm has been hurting for quite awhile now, over 2 weeks so we kind of wonder if there is something else going on. It's still black and blue but looking better each day.

I've figured out Christmas gifts this year I just gotta hunker down and do them. Looking forward to Christmas music and cooler weather (I can only hope). When I go back to Duke in January, I hope it snows! I will at least bring my winter coat in case.

I'm missing Pam and everyone at Duke already, they're like extended family. RIght now I'm at my Grandpie's picking up Lady and grabbing dinner before finally driving home to Tampa. I've only had like 2 nights in my own bed in the past 3 weeks. Looking forward to it.

Too Many Sticks

2010-11-15T08:56:00.003-05:00

You know I'm in the hospital when I post a lot.

I was woken up at 5 am to give blood and I refused. If you could see the state of my arms, you would cringe and crawl into a ball. After countless IV tries and blood tries and 4 tries for PICCs I look like I've been battered. Can't go out of the house like this, people would wonder. So I refused, its my right.

At 8, the same lady comes back for blood and I refuse again. Well this really got the attention of my physician who comes in with her team to convince me to give my precious life blood. At this point I have to give in. But hey, at least the squeaky wheel gets the grease. I have to make them realize you can't just keep me poking me. I think another PICC is in the near future because I can't take it.

The blood lady makes rounds at 5 am and 4 pm so I better not see her again today.

Hello 7800

2010-11-14T20:36:00.002-05:00

I'm back at Duke, this is the third hospital I've been admitted to in 8 days. The first one was incompetent and could barely put in a peripheral. The second did well and diagnosed me with C. diff and chronic pancreatitis but kicked me out too soon it feels like. It all comes back to Duke.

I already feel better knowing I'm here and being treated by my transplant team. They're going to run more tests to confirm this "illness" I've had for what seems like weeks now. I never though my transplant would bring me such trouble with my stomach.

The floor I'm on, 7800, feels like home. I've surrounded with pre and post lung transplant patients, oxygen and pulse ox's, and plenty of hallway to walk. I've gotten weak with all the time in bed so I'm going to try to walk the halls more. I'm hoping also to see my friend Pam who is still here (unfortunately) after her tx.

For now, I'm taking time for mysself, trying to avoid any pain. I have plenty of mags and books to dig my nose into. And a bit of sleep here and there.

I'm NPO until they can figure out whats up, and what do you know, I'm HUNGRY!

Physical and Emotional Pain

2010-11-08T08:22:00.003-05:00

Jessica is @ Shands Hospital in Gainesville for possible pancreatitis. She has been unable to eat or drink in the past week due to pain in her abdomen, nausea and vomiting. Our family has also experienced the difficult loss of my Mother, Jessica's Grandmother. My Mom has always been Jessica's biggest cheerleader and her loss is hard for us to accept and bear. Our local hospital was intimidated by Jessica's medical history, but Shands takes it in stride, thankfully. Dr. Baz is here lung-wise and will keep an eye on Jess as the gastro people diagnose and treat. J-Mom

I like endo

2010-10-29T22:04:00.002-04:00

I like endocrinologists when they give me good news. Like, my A1C is 6.6 which I found out Thursday. Which is amazing! I've always heard you should keep your A1C between 6 and 7, I can even remember having over a 9.0 one point early on in my diagnosis. One thing my pulmonologist was concerned about pre-tx was my sugar control. Well, there! Your A1C measures the amount of sugar in your blood over the last 3 months, in case you didn't know. I don't have to go back to my Tampa endo again for 6 months!

So I'm pretty proud of all that. I'm thinking of Justine today, who may be getting new lungs tonight! I love Halloween but I'll be recycling my knight costume this year. Going up to Gainesville to celebrate this weekend with a good friend. Hoping it helps bring me out of the funk I've been in for the last few weeks. NEED POSITIVITY in my life.

A Big Question

2010-10-24T17:52:00.003-04:00

As I peruse the blogs and facebook today, I question my charity. For years and years I have wanted a cure for cystic fibrosis. Transplant has kind of thrown me in a tailspin with CF. Because now, Im not dying from CF. My lungs don't fill with mucus and get infected with every bug that comes along. I'm still at risk for infection because I'm immunosuppressed but my main problem for my future will be rejection. I will spend every day wondering whether my body is rejecting my new lungs. It's always said that transplant is trading one set of problems for another and though I've had a few issues since tx, mainly digestion and depression issues, I would still choose to have transplant.

So the big question is; do I stick with the CF side of me to cure the disease, or do I put more effort toward research in lung transplantation which is often the only option for those with CF. I walk that fine line. It's true that I feel differently about CF now than I did but CF is still a death sentence, and a world of struggle. My sinuses remind me of that every day. But I also have to think about how many years I'll have with these lungs, with the promise of more years engrained in the research of transplanting organs and anti-rejection medication. I am trying not to choose between CF and transplant but sometimes it is difficult to give each their proper due.

What's been up Jess?

2010-10-19T21:47:00.003-04:00

Hello everyone, I really do owe a proper update. Since my last post, I learned that I am not rejecting my lungs. I've had these lungs for 6 whole months as of yesterday and not even a smidge of rejection, its amazing. I don't know how I got away with it. The first year is when people see a lot of acute rejection as bodies get used to all the medication but I have been lucky enough not to have any. I guess sometimes I still need reminding that I'm post-transplant, these lungs really must have been the perfect match.

My stomach still aches sometimes, and I'm still trying to conquer the almighty ANXIETY. But no new problems besides having really crazy dreams lately.

I've been getting out and socializing and trying to get back into social things. It's been interesting, and sometimes I have found that once I'm out, I'm ok. Other times I don't enjoy myself. It's a struggle but I'm trying to go with the flow. And I'm extremely excited about signing up for classes in November, I've been checking out the classes and I may end up taking 5 different courses! There's just so much I want to take, in addition to what I HAVE to take. I want to be able to call myself a college student again.

I've been enjoying the lower humidity and crisp night air we've been having in Florida. I love the holidays and this is just the beginning.

Back from Durham

2010-10-10T16:41:00.002-04:00

Got back from my 6 month appointments yesterday. All my labs looked good as did my xray, so I'm thinking my bronch won't show rejection. I wasn't able to pass out during my bronch like I usually do, so I'm really thinking about getting rid of some of the medications I'm on. I've stopped my anti-anxiety med, klonopin first. The dr. said he saw an area where my lungs are still healing but its the same as the last time they looked at it so he didn't seem worried but they cultured it just in case.

I've gotta try to keep busy this week. Boredom really wears on me. If I can't find something to do I just end up sleeping which detracts from my sleep at night. It's finally cooling down here in Florida, low humidity is great. I was hoping to jump in the pool since my GJ tube came out last week, but its dropping in temperature so I may have to forgo it til next year. I also won't have to go back up to Durham again until next year! That sounds amazing.

Well, tootles!

This week in...Baseball?

2010-10-04T16:47:00.003-04:00

This has really nothing to do with baseball, but Go Rays! My home team, I gotta stand behind them.

I'm going back up to Duke this week for my 6 month appointments. Yep, SIX WHOLE MONTHS, since my transplant on the 18th. I can't believe how much better I feel since even a month ago. My stomach issues have lessened and that makes me happy. I'll be getting my GJ tube removed Weds morning, first thing. I cannot wait to go swimming when I come home. I'll also be getting a bronch Friday, yay for happy drugs! I actually look forward to bronchs, besides the drugs, I have only had good news (no rejection) from them. Knock on wood!

I'm jamming in my bedroom whilst packing for the trip. Even though I'm going to NC for health reasons, I'm looking at it like another vacation. I hope to walk the Sarah Duke Gardens and get my nails done while there with my momma. Here's some finback whale action from Canada.

Maine Vacay=Success

2010-09-30T13:04:00.007-04:00

I got back to Tampa from my vacation yesterday. I got lots of great breaths of New England air, plenty of walking around-type exercise, a great repreive from it all. To make things even better, I didn't have to tube feed at all! And my weight is up to 114, almost back to my pre-transplant high of 116. I'm feeling good, productive, ready for my 6 month appointments/bronch next week up at Duke. I'm still concerned over why my PFT numbers are so low (only FEV1 57% last time I had clinic). I'm jealous of all of you blowing 70s and above only months out, congrats! I hope maybe increased biking will help me out there.

I leave you with some pictures from my trip. I also got to meet two of my lovely Cysters, Beth and Stephanie while road trippin' it!

So happy we could be here

2010-09-26T16:31:00.000-04:00

Canada photo-op

2010-09-19T20:13:00.001-04:00

KINDER surprise in CANADA!

I'm in New Brunswick Canada at Saint John, holla to all my Canadian friends! Makes me miss Eva.

Off to Maine

2010-09-13T15:50:00.001-04:00

I'm off to Boston tomorrow to begin my Maine vacation. Hope everyone is having a nice month, its been an interesting few weeks. I'm hoping to take lots of great photos to post when I get back. Stay well and be happy!

Life Flies By

2010-09-05T19:48:00.004-04:00

New glasses!

So people are back to school/work/summers over but not quite yet. I feel like the rest of this year is summer for me after all that happened the first half of 2010. Got my new breathers, it seems like everyday I'm ready to take on more. I've been walking and biking everyday that I can and the weather is starting to bring a smile to my face. There's this light breeze that breathes of fall. I can't wait for sweater weather here in Tampa but I get to go and experience it in 9 days! I feel like this trip to Maine is the much needed gift to my mom and I for all the blood sweat and tears from transplant. I'm hoping to be able to eat enough so that I don't have to do tube feeds while we're there. 2 weeks of bliss! I can't wait, but I will. And until then, I'll get stronger. I think my calves may have some definition by then! Cheers!

August Photos

2010-08-31T11:31:00.003-04:00

Germ-free!

Pam and I!

I'm on a Plane!

2010-08-29T19:28:00.000-04:00

I’m typing this up as I’m waiting for my plane back to Tampa. Unfortunately, the internet here at Raleigh-Durham Air is shifty, so this won’t get posted until tonight. When I’ll be curled up at home, with a bowl of Utz cheese popcorn, watching the Emmy’s. My stomach is doing better, I’ve been able to eat more than I have since transplant. Finally! 4 months later! I’m not saying I still don’t have moments, but they’ve gotten better. My anxiety also seems to be more controlled, although I have butterflies now thinking about the flight. I get a little claustrophic sitting so close to the front, but I’ve heard the air quality is better in the front. I’ll be wearing my honeycomb mask regardless. Will try to take a picture.

I have two weeks and then I’m off to Maine with my mom. So I need to try to build up some endurance and strength before then so that I’ll be ready for 14 days of walking/driving/living! I’ve missed my bike and my friends, so will get back to that shortly. Just glad to be almost home.

Good Signs

2010-08-22T20:58:00.002-04:00

Signs that this trip to Duke may work out for me :)

As we took off from Tampa, we saw a double rainbow outside the airplane window. There WAS no pot o gold at the end!

A lovely cricket decided to jump right on my face to say hi.

The cupholders and floorboards in our rental car light up purple! It. Is. Amazing.

Ta-ta for now.

Early visit

2010-08-19T16:45:00.002-04:00

As some of you may have been noticing, I started having horrible anxiety and depression a few weeks ago, basically after last being up here at Duke. This weekend my anxiety increased so bad I ended up at a local ER which couldnt really do much for me. Big surprise right. Most drs. stare at my diagnoses and list of meds and want to run away screaming. My stomach has been tearing me up inside; nausea, retching, complete dicomfort 24/7. I'm a hot mess!

Monday, I decided I can't take it anymore so we fly up to Duke. Hoping they would admit me, but instead have given me three new meds, Klonopin for the anxiety, Compazine for nausea, and flucanzole for some thrush I have in the back of my throat. I did feel a little better on the new meds yesterday. Today I saw my GI dr. and she did an EGD scope down past my stomach, we won't know any of those results until next week sometime. My prograf levels have been all over the place, I guess since I haven't been eating besides my tube feeds. I'm just miserable and had enough. It used to be I'd have to beg to stay out of the hospital, now I've been begging to get put in! But they can't see any reason to admit me, I guess.

There are times when I regret transplant and this week has been one of those times. The discomfort my stomach and anxiety has been giiving me is extreme. I've started seeing a psychologist and so far he has helped a bit but now I'm away from Tampa again, so I'll have to rely on myself more to get things out and not be so closed up about how I feel.

My lungs are doing well. Ironically. I hope all these stomach mumbo-jumbo doesn't affect them at all.

Still Here

2010-08-07T13:18:00.001-04:00

I know I haven't updated in over a week but I've been going through a lot in my head lately and just have no idea where to start. I need to get things sorted out before I can lay it out.

Final test, I swear

2010-07-29T19:10:00.004-04:00

Today I had to have a "small bowel follow up", or SBFU, as my mother delightfully called it! This is pretty much the only test I haven't had yet in the gamut of tests trying to figure out what the heck is up with my digestion these days. Yesterday I had to drink a bottle of magnesium citrate within an hour. If anyone has done this, you know how awful it was. I was miserable! Never too many steps away from the bathroom, and my nerves were going crazy giving me pains in my ankles and chest. I was not a happy camper last night.

Then today was the test. I had to drink Barium (tastes and looks like Elmer's glue) and get multiple xrays taken of my bowels. Thanks to my gastroparesis and general CF dx, a test that could have lasted 1.5 hours lasted 5. Needless to say, I got through a lot of my book. I'm wondering what my GI dr will say about it, other than, your bowels move really darn slow.

I'm a point right now where I'm sick of all the medical crap I have to deal with. In no way do I want to be taking these wonderful breathers for granted, but for goodness sakes, can I go a day without being reminded that I am 3 months post tx? I'd like to be able to have sit down to meals without thinking about how I'm going to feel 30 mins later; whether I'll be curled up with a heating pad or can actually go out and enjoy myself.

I need something to change. I find myself punching my stomach to try to get it to shape up! Not hard, mind you, but enough so that it knows I'm not happy with it! I definetly need a change in attitude, at the very least. I want to be happy!

3 Months Results

2010-07-27T13:42:00.003-04:00

So last week was my 3 month evaluation post-tx. Clinic on Wednesday went well, my pft numbers were up, chest x-ray looked good, blood work was good. No changes to Prograf, I'm on 7 and 8 mg now which may seem like a lot but I'm not eating much so we think that's why I'm on that amount. Only thing was my weight was down, which has been the trend for awhile. My anxiety was horrible and the doctor could see that. So they've upped my anti-depressant with the hopes that it will curb the anxiety; so far, it hasn't. They also decreased my prednisone to 15 mg which is a good step in the right direction for recovery. I also had my IV IG that day, where a "nurse" proceeded to give me the heroin addict look. HUGE bruise where she missed my vein, with no apologies. LIke, I understand these nurses at the chemo center do A LOT of IVs, so couldn't she have hit mine first try? Oh well.

Thursday, I was supposed to get my feeding tube out but since I'm back on them, we didn't get it pulled. 3 months with a feeding tube, ugh! But I need it right now so I'm keeping it. Saw a new gastro (GI) dr. who told me my stomach will get better but its going to take more time. Told me to be patient, which I am not so good at when all I want is to go out and do things. She put me on an anti-spasmodic called Hyoscamine and some probiotics to try to replace all the good bacteria in my system. The Hyoscamine is supposed to help with the symptoms I have when I eat; feel my intestines moving around and such. It's really uncomfortable. I've also stopped the Reglan I was on. I hate gastroparesis.

I did get to see some of my rehab buddies at the Center for Living afterwards. Saw Pam who looks great being only 3 weeks post-tx! It was great to see the therapists and let them know I'm doing ok. My mom and I got our nails done too. I seriously wish I had one of those massage/vibrating chairs they have there at Mimi's, they're amazing on my back.

Friday was my bronch. I was awake towards the end because I could hear the dr saying "open" and "close" as they took samples of my lung to check for infection and rejection. The drugs they give me for the bronch, Fentanyl and Versed are amazing and finally had a good hour without stomach discomfort! And the best news yet: NO REJECTION! I haven't shown any rejection at all. I don't know what the magic formula is to not have rejection but I'm making it! My lungs must be happy in this body.

Back home now, I'm trying to slowly eat again. It's difficult. Everybody keep everything crossed for my friend Beth who got a call as the primary receipient this morning. We're all hoping these are the lungs for her!

Hanging in There

2010-07-23T20:22:00.004-04:00

After 3 days here, I'm exhausted! Although everything has been going pretty well, I have been paralyzed by anxiety this entire week. It started this weekend I believe, just thinking about all the 'what if's?' of these appointments this week. I have had to revert back to tube-feeding to get enough nutrition because just the thought of eating sickens me. Drugs have been changed around to see if that helps. But this anxiety is killer. I'm not sure it will go away just by driving back home this weekend. Had my bronch today, won't get the results until next week so I'm not celebrating yet. My lung function is still getting better, at 56% now, its just this anxiety-ridden digestive system that won't let me live!

I'll have a better update on my appointments later; until then, I'm nursing this yucky stomach and trying to distract myself.

Preparing for 3 month assessment

2010-07-17T23:42:00.004-04:00

Sunday is the official day celebrating 3 months with new lungs! So happy 3 month birthday to my breathers! Mom and I will be getting my 3 month assessment (clinic, IVIG infusion, feeding tube removal, gastric dr, ultrasound, and bronch this week. We're leaving Monday to get to Durham Tues night. Hoping to catch all my old neighbors there at Residence Inn, our home away from home. Will probably see Pam and her new lungs! And Dewey too! Going to be a nice little reuinion.

We have a lot of questions. Hoping for a lot of answers.

Packing tomrw should be fun. Lady won't be making the trip with us. She was so worn out from last time. Dont know if I'll be bringing my laptop, so just heads up for heatlh updates.

Out of Sorts

2010-07-13T19:08:00.002-04:00

The last week has made me want to laugh, cry, and pull out my hair! There's this feeling of rushing that I feel like most people after transplant must experience. Living on "borrowed time" comes to mind a lot. Although I was feeling pressured and rushed to get transplanted because I was so sick before, now I am so well that I still feel rushed to make the best of it. Does that even make sense? Like, well, I've got only so many years left now. Better get my degrees, travel where I want, read what I want....I guess most people maybe feel like they need to get things done while they can, as opposed to when its too late. Maybe that's why its been hard for me to make commitments now. I wish I could blame all these things on the meds but I don't think they explain the whole story.

Here's what I HAVE been doing:
Wrote up a little blurg for the Phi Sigma Pi Mag about the thousand crane journey
Researching for a new bike (thinking hybrid) for improving my exercising routine
THINKING ITS DAMN HARD TO GET YOURSELF TO EXERCISE WHEN YOU FEEL BOTH GOOD AND BAD!
Looking up local gyms because said exercise has been difficult to accomplish on my own
WIll be getting my bloodwork tomrw to see if my Prograf needs to go up to 8mg twice daily
TRYING to eat, its really hard, because I'm still dealing with GASTROPARESIS
Painting, crafting, writing letters, eBaying for Hard Rock guitar pins

Also, to all my fellow post-txers, have you experienced extreme sensitivity to cold or warm things? Especially with water, ice cream, the weather, my teeth fingertips and toes all seem to be extra sensitive to these stimuli! It bothers me.

Oh well, all's fair in love and transplant. Not. Promise to upload some pictures soon, Blogger is being slow about it now.

Full of Sun

2010-07-10T12:18:00.003-04:00

This has been a week full of friends and sun! My car has registered 103 F! The Clockman sure took the ran away but this heat is just ridiculous. Note my huge sunhat to ward off skin cancer. Did you know that post transplant patients are 3 times as likely to get skin cancer. Thus, I take my precautions.

The Clockman

2010-07-05T16:51:00.003-04:00

I'm sitting here resting after doing my mile on the treadmill and there's a man who won't stop going on and on about himself. The Clockman has come over to fix our huge grandfather clock and has brought a thunderhead cloud with him. First, his son won't move out of the house, then his other son is gay and unmarried, then he's got prostate cancer, and hasn't had a house call in 2 weeks. Heard something about a father with dementia. Did I mention he's about to lose his Social Security? And other clockmen keep stepping on his turf and screwing things up?

Oh man. It makes me want to list all the things I take for granted, so that I have a daily reminder of how good things can be. And are. I have times, where its hard to look past the struggles and pain, but today I'm not thinking of them. Had a fabulous weekend, besides listening to Danny Downer in the other room, and have a great but busy week planned! Getting my nails and hair done tomrw and visiting friends the rest of the week. I'm also looking into getting a bike, so I can spend more time outside with the "fresh" air.

Mr. Clockman, when you leave, can you take this awful Florida rain with you????

Home Life

2010-07-03T15:44:00.002-04:00

I can't properly put into words how amazing it feels to be HOME. Gainesville and Durham already seem so far away. Was I really gone for just 5 months, or was it 5 years? Because my life has changed so much in such a short time. I stepped on my treadmill on Wednesday morning and it was the easiest walk I've ever had. Did my mile, was hardly short of breath. And my pulse ox read 98! Today I walked a mile in 21 minutes! I remember a time when I was happy to have walked 0.25 mi with 3 liters of oxygen.

I CAN BREATHE!

My stomach has also seemed to have apologized for its 'upsetness' and the nausea has calmed way down. I'm hungry again and actually eating full meals. I don't think I will need to have my feeding tube much longer.

I CAN EAT!

I've caught up with some friends already. And family is coming over for a BBQ to celebrate my homecoming and the 4th. A trip to Starbucks driving my own car is a blessing! I blast my iPod and crank the AC and just take in the drive. And sing at the top of my lungs! I'm hoping to see everyone soon, please feel free to call me since I can now consider myself well and available.

I CAN LIVE!!!!

Please keep my friend Pam in your thoughts, she had her transplant Thursday evening and is doing amazing according to her sister and husband. But transplant doesn't mean the struggles are over, I know that for certain. So I continue to think good thoughts for her and her recovery.

See, I refuse to believe, that my life is going to be just some string of incompletes.... John Mayer, "Home Life"

HOME!!!!

2010-06-30T11:26:00.002-04:00

5 months

12 hour drive one-way

666(!) miles

2 new lungs

hundreds of memories

being home in Tampa: BEYOND PRICELESS

I'm still taking it all in...

@ the Infusion Place...

2010-06-25T13:49:00.003-04:00

This is a good time to update since I'm stuck (literally) at the Infusion Center here at Duke getting a 3 hour dose of Rituximab. Rituximab is normally a chemotherapy drug that lung transplant patients must get sometimes if their antibodies are donor-specific. The blood test from last week confirmed that I have a weak antibody from my donor, but after this I will only need the IV IG again until the antibodies don't show up in my blood anymore. Not sure how many months it will take, but the goal is to get rid of the antibodies.

So I've got my Mom, my book and my lappy with me to try to shorten the time here. I've got the solumedrol (steroid) going in now to prevent any further nausea. I've still been having nausea and will continue to until this stomach of mine decides to hurry up and heal! I've also been having pretty frequent cramps, for which I blame my diet and CF. My dr is ready to send me home! That's the awesome news. There isn't much else they can

do for me and I finished my 23 sessions of rehab on Weds so my Mom and I will be packing up this weekend and leaving for Tampa Monday!

I'm hoping to watch the Boston Med episode online while I'm here. A CF Warrior named Connor passed away last night, I am sad to read. I hate that so

many people have to suffer, and especially children. Thinking of him and his family today. Please take the time to become an organ and blood donor! And thank your lucky stars to be here and have what you have today, when so many have it so much worse.

It is so freaking hot here in NC! Nearly unbearable. One of those days where the sweat goes through to your underwear! It's ridiculous!

The doctor who saved my life!

And the Winner is....

2010-06-23T19:14:00.002-04:00

ME! BECAUSE I GET TO GO HOME TO TAMPA NEXT WEEK!!! SO EXCITED!

More later because my friend Julie is coming by to visit!

Also, wore my Piper shirt today and had lots of nice compliments! I like rockin' a cool shirt with a cool new set of lungs!

Radioactive Eggs Pt.2

2010-06-18T15:43:00.004-04:00

This week has been a jumble of things. This week we found out that my body is producing antibodies, probably in response to the foreign lungs. The treatment for it specific to me is at least 3 monthly treatments of IV IG (Immunoglobin). This will hopefully take care of the antibodies, since antibodies may mean rejection in the future. I hardly understand the whole "antibody" issue. Just know that I'm not in rejection, Duke is just very aggressive when it comes to these indicators. My first infusion was yesterday, and my mom and I went to a chemotherapy infusion center there at Duke. It was kind of sobering to see all the people there for chemo and such. It went well and I got a little cat nap thanks to Benadryl during the 3.5 hr drip.

Another thing is that no one can pinpoint why I still have nausea. We know I have gastroparesis, which was confirmed with a solid gastric empyting test after my transplant. But the stomach wrap (Nissen) and pyloriplasty surgeries I had a month ago should have greatly increased the amount of food moving around in my digestive system. Today we repeated the test, and although we don't know the results yet, I think it will show that my stomach is still basically paralyzed. I really hope this isn't the case, because I don't know what else they could do for me. As it is, my lungs are good and I wish I was home!

The goal for this weekend is to get out during the day in order to try to keep myself active to avoid nausea. My mom and I are thinking maybe the mall. I will definetly mask up if we go. But I'm looking forward to some Dippin' Dots! Ice cream is something I can still enjoy at least. I've also been enjoying Glee, the movie "Ponyo", bubble baths, and the Ambien I'm back on to help me sleep better! Lady wishes she was home too, but she enjoying pal-ing around with my animals!

The Transplant Donut

2010-06-15T20:28:00.003-04:00

Today, I'm looking back at the past few months in retrospect. Meeting my CF friend Pam today has made me think back to the oxygen tanks, the wheelchair, general sickness.

The entire transplant process is like eating a jelly-filled donut (assuming you like jelly and don't much like the donut part). The first "cake" part you get through seems very long and difficult. You're trying to reach the ultimate prize, the jelly, but you're not sure how far to bite before you hit it, you just know eventually you'll get there. It may takes a small nibble, it may take many before you reach it.

Finally, you reach the good stuff. The jelly. This is the transplant surgery itself. The first drop of jelly in your mouth is that phone call. You indulge and enjoy the deliciousness of the moment (in actuality, you are asleep undergoing the toughest procedure in your life). This is the easy part, its all in someone else's hands.

Then comes the other half of the donut, more "cake". It's the recovery. This means more unknowns, more waiting for tests and results, more/less medication, infection, rejection, nausea, pain and more pain. Not to mention, just plain getting your life back. Recovery is harder than the first half of the donut because you've already had enough. You're full and ready to bounce back into life. But you can't, you've got to finish it out.

These are some thoughts I've had today.

No Answers

2010-06-11T19:44:00.003-04:00

Another week gone by, and nothing to explain why I have such wicked nausea. I had a CT with contrast done on my stomach Weds night to rule out pancreatitis or a blockage and nothing of significance showed. The word my mom and I use to describe the nausea is DEBILITATING. Besides making it to rehab all 5 days this week, I haven't been able to do anything because my stomach bothers me so bad.

We should be thankful that I can breathe so easily. But this holds me back. And it doesn't seem to get any better. I blame the CF for giving me a messed up digestive system to begin with. I'm going to see a GI doctor probably next week to try to figure this out. Also found out I probably won't be coming back home until after July 16, because that's when my 3 month bronch will be done.

My online CF friend Pam made it to Duke this week. Looks like she may be getting her transplant here. I'm excited for her, just wait until rehab! I did go and get my nails done with my mom this week so that's been the highlight. Trying to keep my head up while these stomach issues persist.

Lewis Black supports CF

2010-06-08T19:09:00.002-04:00

Here's a great video my mom and I came across while watching Lewis Black clips on YouTube.

Click here!

Sick for Home

2010-06-06T21:10:00.003-04:00

I've got to say that this weekend honestly was the first time I really wanted to just be home. Home in Tampa. My dad went back home earlier this week so its just me and my mom again, and Lady of course. But now that its been 7 weeks since my transplant, I really missing my own bed, and my recliner, and my friends back home. I still don't know when I'll be able to get home.

I'm still having a lot of trouble with my stomach. It's difficult eating even soft foods. Applesauce and pudding is really the only safe thing. I'm nauseous all the time, and get pains at the top of my stomach if I eat something too big. I will have to talk to my dr about it this week because I feel like I shouldn't be feeling so bad.

I'm so thankful to have these lungs but I want to be able to celebrate them! I wish I could just fast forward to the point where I feel good.

No rejection!

2010-06-02T18:30:00.002-04:00

Today I saw my pulmonologist and got the good news that my lungs aren't in rejection. That means that my body isn't fighting the new organs. The bronch I had on Friday confirmed this. In the first year, it is extremely likely that I will encounter some acute rejection but today isn't the day!

I also got my PICC line out, the dr didn't foresee me needing it anytime soon. I got the feeling I will still be here in NC for awhile longer. I need to be able to stop the tube feeding at night, but I can hardly stomach any food still. Chocolate milk has been my go-to drink.

My friend Beth had a dry run last night. Dry runs are difficult but this only means she's right up there for lungs! June is going to be it!

Eating 101

2010-05-30T17:10:00.003-04:00

I apologize for not having updated in a while. I got out of the hospital Weds and have had a hard time of it since. I find myself constantly nauseous, and Zofran just doesn't cut it. So I've been taking Phenergan, which knocks me out pretty well. I'm supposed to be advancing my eating but everytime I think of food, my stomach lurches. So I'm taking small steps with little amounts of soft foods starting today. I though this whole stomach issue was solved! It makes me really frustrated that I don't feel better yet.

I realize that I've distanced myself from friends in the online community but I don't want that to continue. I still think of my fellow transplant-ers; Tori and James, and others still waiting; Piper, Beth, Kelly. And I want to be able to give accurate advice to those who have asked me about the Duke Program. If you all don't hear from me, kick my butt into shape and fill my inbox! I want to be able to "pay it forward" since so many people's experiences helped me pre-transplant.

My pain is better. I was kind of hoping the "transplant" pain would disappear while I was experiencing pain from the Nissen. It has definetly decreased, but not gone yet. I'm hoping my lung function will start jumping up now that the pain is less and nutrition is slowly getting better. I'm really discouraged by a lot of the problems I've been having, but I have to think about how much worse it could be.

Thank you to Kelly and Dane for visiting this week! And Josh for the t-shirt! Guess I'm officially awesome now!

Hello Jello!

2010-05-24T15:44:00.002-04:00

Hi, I'm posting from the hospital. I had a barium swallow test done this morning that shows my stomach seems to be working better so I've had jello and apple juice today! I'm finally starting to feel hunger again. Every since transplant I haven't had much of an appetite because of the tube feeds and all the tummy issues.

The pain from the surgery has been intense. It is definetly better today, which is a good thing because I know longer have my morphine pump/button! The hardest part is sitting up. You have no idea how much you use your abdominal muscles until they have been operated on! But I am starting to feel better and being able to eat clear liquids is the icing on the cake!

I've been on the 7800 ward which is a community in itself. I like it a whole lot better than the 3300 step down unit I was in after surgery, and the ICU! Except that I'd still like a one-on-one nurse! Maybe in a week or so I should be able to start eating soft foods. We'll see.

I'm so glad James got his transplant! Must go catch up with others now!

Pre-op Post

2010-05-20T16:50:00.002-04:00

Hello blogworld, I still feel like I haven't had much to say. I've made it to rehab 3 days this week, and my legs are finally not feeling so much like jelly! I'm still losing weight because of the digestion issues but tomrw morning is my surgery (partial fundoplication and pyloriplasty for you fancy medical folks). I'm nervous about the pain afterwards, and having to stay in the hospital for about 4 days. But I need to do it, and have to trust that it will help my gastroparesis.

I'm definetly grateful that I've been given great lungs. It's just hard to enjoy them and build up their strength when I hardly have any energy because I can't eat due to the gastroparesis. This is part of the journey I didn't anticipate, and don't enjoy. At least I'll get a 3-4 hour nap tomrw, guarenteed. There isn't much else to update about. I enjoyed my time with my Nana and Aunt Tina and Lee this past week and am glad they were able to spend time with us up here!

Frustration

2010-05-16T19:51:00.002-04:00

It's back on liquids again for me. My stomach just will not empty anymore. My mom did some research and discovered I have gastroparesis, or paralysis of the stomach. The feeding tube is basically the only way I'm getting nutrition right now and its rather annoying. And I still have to wait 5 days for this surgery that will supposedly help me. I honestly don't have a lot of faith in it. I feel like my transplant team has kind of pushed this digestion issue aside, whereas I feel like its the only real problem I've had since transplant.

I've been spending a lot of time in bed, either trying to sleep or distracting myself. A stop at AC Moore got me some more lovely origami paper (thanks Nana!) and this needle felting kit which I've never done before. I'm ready for this part of the journey to be over now. I want to be up and about and I can't because I feel sick to my stomach or in pain in my chest or weak because I'm not getting the nutrition I need. GRRRRRR.

Thinking of Tori and Gina who got their transplants yesterday! Yay for lungs!

Bye Bye Staples

2010-05-12T20:15:00.004-04:00

I guess its another milestone this week, I got my staples and stitches out today. I'm glad they're out, but I still feel really tight around my chest, still hoping for that deep breath! Compared to how I used to breathe, I'm getting some good quality breathing, but like everyone, I want to hit that 100%! I'm still around 46% in my airways and my x-ray continues to show improvements. The dr. is very happy. Plus, my oxygen concentration is over 130%! Normal is 75-100. However, this whole transplant thing has put my digestive issues (thanks CF!) on the forefront. My stomach doesn't empty well at all, so they will try to "fix" this with a pyloraplasty along with the already scheduled Nissen stomach wrap next Friday. I really don't want any more surgery and hospital time, but this is what is going to get me home. I've realized that with transplant, it really is two steps forward, one step back. Sometimes two steps back.

My legs still feel like water. And I'm still having pain, though I'm cutting down on the pain meds as much as I can stand. Thank goodness for my heating pad. I haven't been online too much this week because I find myself hitting bed really early and haven't little energy for much other than appointments and rehab. Hope this is an adequate post for now.

Oh yea, and my sister's here again!

A Brief Respite

2010-05-07T16:28:00.002-04:00

I haven't posted the last few days because I've been battling the demon known as pain. It's odd, but I've had more pain the last week, than the first week after my transplant. It's been almost 3 weeks since, and I guess my muscles are coming out of the numbness they were experiencing with all the drugs. I'm still numb in many areas around my chest but my sternum and back are certainly NOT numb!

My appointment on Weds went well. My lung function that was 12% before transplant is now 48% with my new lungs! And that number will continue to climb, probably for a few months, as long as I keep working out and walking. Lungs don't like to be lazy, as my surgeon said. Everyday, my home spirometer (that measures lung function) is higher than the last. I've got some good lungs here! My legs just need to catch up! They're still pretty week, but rehab will get me back to being strong lung-wise and muscle-wise. I'm excited about what I will be able to accomplish once my body is in check with my new lungs!

The second surgery I've supposed to have to take care of my acid reflux problem is the stomach wrap, or Nissen surgery. We're trying to get this set up soon because tube feeding really stinks! Thankfully, I am able to drink and eat small bites of soft foods now. This is a blessing. There's not really much else to say at this point except that the path still continues in the right direction, so I'm thankful.

No Pain No Gain

2010-05-03T18:56:00.004-04:00

So I had a weekend filled with pain, but also with rest. Pain is something I've come to expect now that the healing really seems to be taking place. My stitches where my chest tubes were and my 80 staples under my chest have begun to itch, leading me to believe its time they come out! Hoping that will happen Weds, when I will also be doing my first official PFTs.

Started back at rehab today. I had always thought, pre-tx, about how different everybody looks when they came back from surgery. I wondered today what the others thought of me. They could see I obviously was not wearing my oxygen cannula and dragging around tanks anymore. Perhaps they could also see the bigger smile I wear, or notice how much more I was talking. It's great to be on this side of the coin. My fortune came true!

My neck still looks like its been mangled by a vampire (I had two different central lines in my neck), one of which gave me a blood clot in my right arm and made it swell to twice its size! Thankfully, that has come down. I think that would be the major complication I experienced after transplant because they were worried it could have traveled to my new lungs. Rest assured, that did not happen. I guess I have been very lucky in my recovery.

Speaking of being lucky, my amazing Brothers at Phi Sigma Pi sent me the best care package ever. I can now sport Phi Sig at rehab with my brand new shirts! And you guys know me too well with the Dragon thing :) Love to you all, I will send you an e-mail soon! Thank you to everyone who continues to support me, the hardest part may be over, but there's still a long way for me to go to really be able to breathe again.

Transplant Day Pictures

2010-04-30T17:30:00.006-04:00

These are some pictures my mom took on the day of my transplant, April 18. The last picture may be difficult for some, so I apologize, but I want to show how serious this surgery is and there were other pics much more shocking.

Waiting in the ER

Right after we got word it was a go from the tx coordinator

In OR holding area looking glamours

After surgery that night.

I had a rough first night at home. Couldn't sleep too well, had a lot of back pain. Today I went back to the Center for Living to get my post-tx eval. I will working out with them again starting Monday, kind of looking forward to it actually. My muscle I had gained in the program before tx, seriously set me up for better recovery. I'm ridiculously weak today, can barely walk, but I'd be a lot worse off had I not had those 25 days of exercise.

I'm thankful to be breathing with new lungs tonight. There have been so many complications and troubles over the past 2 weeks, but the honest truth is that I can go outside and sit by the pool here at our hotel without oxygen and without getting extremely out of breath. It's a beautiful thing.

I'm home!

2010-04-29T18:07:00.002-04:00

After 11 days in hospital, I am home in Durham at our home away from home. It feels good to be home. A bit overwhelming for all of us, but Lady is happy. I'm on night feeds via G tube, which is a pain in the you know, since that is the only form of nutrition I get besides a few sips of thickened liquids with my pills. Which are many! Hoping to post some pictures soon so you get some idea of the last few weeks. I have lots of appointments and will go back to rehab next week. Busy, busy but at least maybe now I can get some sleep. Although, I shot awake crying out this aftternoon after soon unknown nightmare. Darn meds.

Thanks to my mommy

2010-04-28T12:51:00.002-04:00

Hi guys, so im feeling really nauseas right now but i wanted to take time to post. I have a rough week of recovery; no sleep has been esp the hardest. I also cant seem to type right, i think i may have a bit of that prograf tremor! Good news is that I'm done to my last two little chest tubes, my pfts are climbing everyday (1.38 FVC today!) and if I can just keep getting up and exercising around the halls (must do 20 laps today), I may be home to our home away from home at the hotel. i hate that ive missed out of on so much since ive been out of it but i know its necessary. I'm still hoping for lungs for my friends! I still think No Lungs No Peace!

Thanks to my mom and dad for keeeping everyone up to date. They will still conitnue to update, as i am not quite there yet. thanks!

Jess is Determined

2010-04-28T10:37:00.003-04:00

Jess' surgeon came in this morning and told her "laps are the only thing keeping you from going home". He says if she can do 20 laps today and tomorrow, she may be going home. I think Jess is determined to accomplish that and get home where she can have it quiet, sleep in her own bed, have her Dad, I and Lady looking after her with no beeping IVs, hospital room door opening up every five minutes, that being-under-a-microscope feeling. Recovery at home could be just the ticket! JMom

Walking Her Way To Freedom

2010-04-27T06:39:00.006-04:00

Jessica walked her hospital floor hallway four times yesterday, with her laps totalling a half mile. All this effort was made without oxygen, breathing on her own with her new lungs. And believe me when I say recovery is hard work. Her catheter and another chest tube were pulled, increasing her feeling of freedom. Pain is still an issue but Jessica is determined to rise above it and not let it hold her back. Her doctor says with her doing so well, she should be home here in Durham by the weekend. Pharmacy came by yesterday and we went through the list of anti-rejection/daily meds Jess will take for the rest of her life. In many ways, we are trading her list of CF meds for the new transplant ones. She does still have CF of course, just not in her lungs now - thankfully! When Jess had a look at her blog/facebook/email numbers, she was overwhelmed by all your support. She made her first post to her blog too letting you know it'll take her some time to get through all of it, but she will get there! Thanks so much to the Breathe Team! Jessica's Dad and I too have relied on you all! JMom

bear w me

2010-04-26T18:36:00.002-04:00

conitue to bear with me as im recovering. its really tough. i appreciate everyone but my phone has 300 fbok message and 200 emails. i have to concentrate on getting better, hoping to get out of hospital this wkend.

p.s. bronchs are the worst.

Just Breathe

2010-04-26T10:38:00.004-04:00

Jess continues to breathe on her own. The miracle of transplant that I hoped for has happened for her and for our family. Saying I am thankful to the donor and their family just doesn't begin to express the gratitude I feel. Even with the issues that seem to arise and be resolved at the hospital daily, even with J's discomfort and at times what may seem slow progress, I'm glad that the donor's family made the decision to donate life. I've no doubt their decision came during what was most certainly one of the most difficult days of their lives. And because of their resolve, Jessica has this gift of being able to breathe on her own! JMom

Stepping Down

2010-04-25T09:13:00.004-04:00

The good news is that Jess was moved from ICU to a step-down unit yesterday and she is breathing on her own now (amazing!), no more supplemental oxygen. The step-down unit has a lesser patient to nurse ratio than a regular hospital floor. The bad news is that the pain is greater given that the epidural in the ICU was removed and she is mostly relying on orals to help her deal with it. She is exhausted from sleep deprivation which makes the pain more acute. These are the days we knew were coming and we just want her to get through to the other side where she can be pain-free and rested. Her Dad took her Breathe Team collage in this morning to inspire her to focus on the big picture. She has asked for her cell so hoping for a better day than yesterday! JMom

Still in ICU

2010-04-24T06:01:00.005-04:00

Jess finally got her feeding tube in yesterday so she's getting some nutrition now. In addition, she was allowed to drink small amounts of some "thickened" water and apple juice. She loved it. Wants cookies and milk but they aren't going to let her have that right now. She did get 3 out of the 7 chest tubes removed and her vitals seem to be stabilizing. Jess is still in ICU but no longer considered critical. She is primarily there for the constant care she gets from the dedicated nurse assigned to watch over her. JDad

Every Breath She Takes

2010-04-23T10:20:00.007-04:00

The pain is finally under some control; not an easy task. The feeding tube should happen today and three of the seven chest tubes should be removed. J is up walking three times a day. She is still in ICU and using some oxygen. After breathing for so long with compromised lungs, Jess has "forgotten" how to breathe deeply. As the pain lessens and she becomes more comfortable in her body, deep breathing will return. JMom

Road To Recovery

2010-04-22T10:52:00.003-04:00

It's important to get up and let the lungs open up and expand so Jess walks twice a day. Pain is an on-going issue and it's a balancing act to ease the pain and not suppress the breathing. She had and will continue to have daily bronchoscopies to clear out any secretions in the lungs until she can cough it up on her own. It seems ironic to suggest J can't cough as those of you with CF know coughing is one of the things you do so well. Her incision and chest tubes make coughing "unpleasant". The feeding tube has not been inserted yet, still working that.......J's spirits are good considering that she probably feels like she's been run over by a truck and hasn't had real sleep or food since her call came Sunday at 4:30 am. She knows she has her Breathe Team behind her all the way......hoping for a slow and steady recovery. JMom

Take the Long Way Home

2010-04-21T06:01:00.006-04:00

Jessica was up and walking twice yesterday.....walking is the key to recovery and it is a major undertaking with all the tubes/monitors/IV pole that go with her. She also had her first fully-awake bronchoscopy yesterday, which involves spraying lidocaine in her nose/mouth, coating a scope with jelly and inserting it in through her nose into her new lungs. They are checking the incision, taking snips of tissue, and suctioning any fluid. It's not a pleasant experience but a necessary evil. Today she is having a feeding tube inserted to feed her nutritionally. These are all standard procedures for transplant patients that we knew would happen. This recovery will take time and we are in it for the long haul as home is the goal. JMom

Stepping Out

2010-04-20T11:26:00.003-04:00

Jess was up and sitting in a chair last evening when her Dad and I visited her. Her mouth/lips are dry like the Sahara from the vent and pain is still an issue. Mostly likely the pain keeps her from taking that longed-for deep breath so they are working the pain issue still. And thankfully with J off the vent, she can tell them where it hurts and I know she will :). Her Dad and I filled her in on the highly active Breathe Team and all the facebook posts/e-mails/blog entries awaiting her. She smiled and is comforted by the great support you all are offering. This morning at 11 the physical therapist shows up and they are going begin to "walk", one step at a time! JMom

Baby Steps

2010-04-19T18:32:00.000-04:00

Jess is off the vent as of 4:30pm breathing with just a little oxygen, which is to be expected. J is awake, albeit tired and she has whispered to me, mostly about her great thirst, her dry lips, and some pain. The medical staff is working the epidural to lessen the pain. J currently has five chest tubes in to ensure proper drainage and we have often heard chest tubes are more painful than the incision. As I write this, the ICU nurses are going to get J
up and in a chair. Kris and I look forward to seeing her when they let us back in ICU. I have told J of all the love and support coming in from the Breathe Team. Thank you so much - you all are the best! JMom

Goal for the Day

2010-04-19T10:16:00.002-04:00

Kris is at Duke this morning and has spent time with Jess in ICU. Her vitals are good and she is semi-awake. She is trying to talk to her Dad around the vent tube in her mouth - that's my girl! The goal for today is to give her an epidural for pain, remove the vent and have her breathing on her own (imagine!), have her awake and maybe even up! JMom

A New Beginning

2010-04-19T06:08:00.002-04:00

Jess's Dad and I did see Jess in the ICU for ten minutes last night; she is sedated and on the vent and of course they were going to keep a watchful eye on her. We phoned in this morning and she is stable. Today marks a new beginning for Jess with her new lungs. The hope is to have her off the vent, awake and breathing on her own soon. No doubt there will still be bumps in the road during her recovery. I want to thank all of you on the Breathe Team for your support and love for Jessica throughout this long journey of hers. Her family, friends, fellow CFers, all of you mean so much to Jessica. Yesterday when she was preparing to go to surgery, she was overwhelmed with all your e-mails/facebook posts/blog entries. I'm sure she will want her laptop/cell phone once she is up and feeling better. Her Dad and I thank you for the outpouring of concern and affection.

Out of Surgery

2010-04-18T20:34:00.002-04:00

Jess is out of surgery. Eight hours. Her doctor spoke with us and they will watch her in ICU throughout the night. Her Dad and I are waiting to see her. We saw her briefly as they rolled her by, vented, monitored, tubes here and there, but she's our Jessica! Now the recovery phase begins......JMom

Quick Update #2 from J's Mom

2010-04-18T14:11:00.001-04:00

Just received a call that the lungs are here and things will progress quickly now. It's going to be 6-8 hours for the surgery.......keep you posted as we know.

Quick Update from J's Mom

2010-04-18T12:24:00.002-04:00

We talked with Jess and the surgery fellow just before noon and he said things looked really good. They wheeled Jess down the hall and she is ready for a new start. We have no idea how long surgery will be but I'll let you know as soon as we know. Jess so appreciates all of you on her "Breathe Team". She was getting lots of great feedback and support from all of you right up until we kissed her and told her "go get your new lungs!"

It's happening!

2010-04-18T10:54:00.002-04:00

The lungs are good, the surgeons will be coming for me in half hour. I'm sorry I dont have time to call/message everyone! Please bear with us through this!! I'm beyond excited/nervous! Thank you all for the love!

Early Morning Call!

2010-04-18T06:47:00.002-04:00

Sarah is Here!

2010-04-15T19:58:00.002-04:00

Today I took a mental health day, no rehab. Now that I'm in the graduate class, I feel like I'm a little more entitled to breaks. Sarah flew here this afternoon anyway, and will be spending the weekend with us. It's good to see her! It's been nice to take it easy, I did get to go out with my Mom for a bit, gotta catch some of that sunny vitamin D! For the moment, I am content. Got a busy day tomrw, but then more relaxing to be had! I needed today.

By the way, I love my BT (Breathe Team)! You all are amazing!