Friday, November 27, 2009

Post surgery/thanksgiving Update

Thankfully, I was able to spend some time with family on Thanksgiving Day. Dinner (or rather lunch) was held at my cousin's house and we had a full crew! The food was good and I was able to enjoy a little bit of it. It was really the 1st solid food I had had in days. The pain is getting better, but still there. It is more soreness than anything and LOTS of swelling.

I had forgotten to mention previously that I have 4 incisions than the normal 2 incisions when done laproscopically because I had some fluid in my abdomen and they decided to go ahead and drain it off during surgery. They sent a sample of the fluid off just to make sure it was ok. All of the cultures came back negative. I think having the 4 incisions contributes to the additional pain.
My mom told me that when the surgeon went in there to remove my gallbladder, it had already collapsed. A lot of use the gallbladder was providing me ;)

I have a lot of fluid in my stomach and some other not-so-comfortable places. I was a little concerned, because none of my discharge papers from the surgery team mentioned anything about fluid or swelling. So I called my transplant coordinator. I had also been running a low-grade fever. So my coordinator wanted me to go up to the transplant unit and get labs drawn. I did that, waited for the results. Most everything was fine except for a few liver function levels were high. So they put me on some lasix...FUN STUFF and I have to get labs redrawn on Monday...so lovely! I'm glad I called though because it could have gotten worse. I haven't taken any lasix in 5 years since my transplant. It ought to be a fun night!!

I guess I better get to studying, as I am way behind. Finals are next week and I am on the verge of passing this anatomy class. I seriously need a MIRACLE for anatomy class right now. Not good!


Thanksgiving Friday Fill-In

Thanksgiving Edition of Friday Fill-In! If you are interested in participating, click here.

1. Wait! Wait, don't forget the cherry on top!
2. Eating dinner is usually followed at once by watching television.
3. The trouble is i have a hard time getting comfortable.
4. I would love to be in a tropical setting man, many, many miles away.
5. With a faint pop here and there, my neck feels better!
6. Winters can sometimes be shadowy and ominous (although not too frequently in Alabama).
7. And as for the weekend, tonight I'm looking forward to resting, maybe watching a movie, tomorrow my plans include attending an anatomy study session, building my lymph node, and maybe doing a little bit of shopping; and Sunday, I want to go to church and study some more!

Wednesday, November 25, 2009

HOME!

After a little bit of convincing to my transplant doctor, he released me to come home tonight. I got home about 7:00 pm. He wanted to keep me a few more days. But I told him that I thought I would recover better at home. And that I could find more foods to eat at home verses the hospital. So he was perfectly fine with that. He gave me a trial run to see if I could manage the pain with just oral narcotics and not IV pain meds. So far so good. I'm taking Lortabs and Percaset(spelling?)around the clock in addition to nausea meds. I've lost about 10 pounds...not good. The pain is getting better, but is still there and I am extremely sore. I'm just glad I am home.

I'm hoping to be able to spend some time with my family tomorrow for Thanksgiving. But honestly, don't know if i will feel like it or not. I will see how i feel in the morning.

I really expected to be feeling so much better and never expected the recovery to be this tough. Most everyone who had the surgery told me it was very minor pain.

I hope everyone has a great Thanksgiving. I am thankful to be home and thankful to just be alive again to celebrate another year! May God Bless all of you!

Tuesday, November 24, 2009

Surgery Update

Sorry for just now posting an update. Briefly, here is a quick update: The surgery was successful and was able to be performed laproscopically. However, I am in a tremendous amount of pain and are taking pain meds around the clock. I have 4 small incisions and most of the pain is around this area. i also have pain in my shoulders, which I was told this is due to the air they put in your stomach during the surgery.

This amount of pain was totally unexpected and I hate it. I'm so uncomfortable. I haven't been able to eat, so I am on IV fluids continuously. The surgery team has released me, but the transplant team wants me to remain in the hospital until the pain is better and I am able to eat and gain some weight. I am very uncomfortable and very frustrated.

I'm praying tomorrow will be a new day, and I will feel tons better! I will try and post another update tomorrow. This is the 1st time I have felt like being on the computer. Thank you for your prayers!

Monday, November 23, 2009

Music Monday-Breathe

Wow! It's been a long time since I've done my Music Monday posts. I have a few lined up...so hopefully I can continue it. I have chosen for this week the song "Breathe" the remix that includes 3 CF singers and Matt Scale, the original music artist, who recently passed away. Below you will find the trailer to the song and a little bit of the music, but I was unable to upload the entire song. So if you haven't heard this song, I highly recommend checking it out. You can do that by visiting CFvoice.com, and clicking on "Breathe." There you can hear the original song, the remix, as well as a music video.

This song is pretty cool, very inspiring. Breathe....such a powerful word. I think sometimes, everyone just needs to take a big deep breath, and BREATHE! We all get so caught up in life, that I think some people forget to realize how precious breathing is to a lot of us, including Cystic Fibrosis Patients. We will one day breathe like "You", but until then, we struggle each and every day to breathe. And I am oh so ever grateful for my 2nd gift of life, giving me the luxury of breathing...it's an awesome feeling! ENJOY! (I've posted some bio info and some of the lyrics below).



The three CFers singing in this video are:

Tess Dunn
14-year-old singer/songwriter
Cut her first album, “Darling Just Walk,” in 2009
Pianist, dancer and a self-proclaimed “CF Warrior”


Rose Harting
33-year-old singer/songwriter
Calls her ukulele “Sugar”
“Fly,” her first CD, rocks the soul


Josh Mogren
27-year-old singer and husband
Channels Bobby Darin
Sings Breathe to commemorate his late sister, and Matt



Some of the lyrics, including the chorus:
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.

Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.

I see the future.
It seems so clear.
That one day I’ll breathe like you.

Then I think that I’m all right
But it keeps changin’
Like the weather.

It’s not up to me
How I feel
How I feel
Inside.

I wish I could breathe
Like you, oh, breathe
I know the answer’s out there.
Won’t you help me, please?

Friday, November 20, 2009

Surgery SOON!

My surgery (to have my gallbladder removed) is Monday. I have to be in the admissions area at 6AM...EARLY!!! But hey, I'm all about EARLY as I want this done and over with NOW. This week has definitely been a struggling week: missing work, missing classes, including my final lab class before the final exam. The pain is unbearable, with some days not even being able to stand up and walk. On those days, I'm basically sleeping, taking pain meds constantly and using heating pads constantly. So, needless to say, i am SO SO ready for the surgery. I've also lost about 6-7 pounds (not good for my little petite body). I'm taking anti-nausea meds around the clock, and food just isn't getting along that great with my stomach. I did manage to work the last 2 days...trying to get in extra hours since I will be off work all of next week.

I will update Monday-hopefully-depending on how sleepy and drugged I am :) I will be admitted to the hospital right after surgery to our transplant ICU; as far as how long I will remain admitted is unsure of right now. Definitely until Tuesday; the estimate is Wednesday. Hopefully I will be able to enjoy Thanksgiving with the family and get back into the normal day-to-day routines! It just all depends on how my body tolerates the surgery and recovery. Unfortunately, I have some sort of cold, and my wheezing is out of the roof...crazy and very annoying and making it hard to breathe. I'm hoping everything is just related to sinuses; but it does make me a tad bit nervous about Monday. My blood pressure has been sky-rocketing, which is unlike me. But my transplant coordinator feels it is due to the pain; (so that's my hope too). The pre-op nurse at my surgery consult appointment last week wasn't too pleased. But I assured her it was being taken care of.

Please pray that everything goes well with the surgery and recovery!!! This weekend I will be resting, running a few errands, building a lymph node for an anatomy extra credit project, and last but not least, studying for anatomy lecture and lab finals, which are the week after Thanksgiving. I hope everyone has a great weekend!

Tuesday, November 17, 2009

CF Education Day Fall Web Cast

CF Clinical Research: Learn, Ask, Join: A Live Virtual CF Education Day Web Cast

When: Thursday, November 19, 2009 @ 8 p.m. ET

Join the CFF for the fall Virtual CF Education Day Webcast to learn the latest in CF clinical research and ask what you can do to join a CF clinical trial. Based on presentations from the 2009 North American CF Conference, you will hear updates about CF drugs in the pipeline and learn the basic principles for clinical research and participation.

The two-part Web cast will feature: *George Retsch‐Bogart, MD, Associate Professor of Pediatrics at the University of North Caroline at Chapel Hill, AND *Elizabeth Hartigan, MPH, RN, CRM, Clinical Research Manager at Children’s Hospital of Pittsburgh of UPMC

The Web cast forum offers an opportunity for questions from the CF community to be answered. This educational tool helps to empower people with CF, families and friends to take an active part in CF care through increased knowledge about the research and the highest quality care.

Click here to register for this webcast!

Monday, November 16, 2009

CFVoice.Com

I've never really known much about this website and have only visited it a few times. After receiving an email about all the resources that were available via CFvoice.com, I was amazed! I highly recommend giving CFvoice.com a visit. Many of you may already be familiar with the website. Parents...there are lots of resources for you as well. Visit the website and/or click on the links below for more information.

For the 6-8 age group: Educational CF games and cartoons include:
Team Zude & You
The Game Arcade
Color with Zude
Memory Game
Zude Toons
Germ Jumper Game


Ages 9-12 has a Wacky Workshop with different activities to teach children about CF!
Food for Fuel
Bacteria Blaster Game
Meds in Me
Up Down Sideways Puzzle
Amazing Airways Game
Tween Videos
The Game Arcade

Ages 13-17 section: It's all about U! has some very useful resources and tools for connecting with other CF patients!

Mentor U
Teen Podcasts
Teen Videos

Ages 18-24: Transitions :Listen, watch, and read tips about transition into an adult CF life!
Young Adult Videos
Young Adult Articles
Young Adult Podcasts
CF Recipes

Adults: Movin' ON: Stories of caregivers, marriage, and family planning with CF!

Adult Videos
Adult podcasts
Adult Articles
CF recipes

There is a Parents and Caregivers Section as well that seems very beneficial!
It includes CF recipes, podcasts, and articles. It also has videos of other CF families and their stories and experiences. Lots of fun and resourceful information!

The site also includes community features, a newsletter emailed quarterly you can subscribe too, personalized calenders, screen savers and wallpaper for your computer, and much more!

Saturday, November 14, 2009

Digitize your CF routine!

This Treatment Tracker tool from CFvoice.com can help you organize and track your treatment information right on your computer! You can track and organize medications, airway clearance methods, nutrition information, and much more. It was designed especially for CF patients only. I received an email about this and I thought I would check it out. Although I really don't need it for myself, I thought it might be beneficial to some of you other CFers out there, and maybe even parents or caregivers. I highly recommend checking out. It's probably more for those CFers who don't adhere to routines very well or have a hard time keeping track of when to do what, when to take what, etc., as well as for parents of CF kids. Maybe for those parents who are having a difficult time getting their child to adhere to doing their vest or taking certain medications, there is an option where you can check off each time you complete an activity. Click here to check this tool out and to view a demo. You do have to register on the website, but it's free. Novartis Pharmaceuticals sponsors CFvoice.com. and is highly involved in the CF community.


Track treatments by type
From diet to medications, enzymes to exercise, you can enter all types of treatments.

See each treatment's details
View your treatment details like type, amount, time of day, frequency, and more.

Monitor your adherence
Track your progress. Green checkmarks show the treatments you've completed. Missed treatments are highlighted to help identify possible areas for improvement in your schedule.

Print for your reference
Save your treatment schedule as a PDF to print for your next doctor's appointment or visit to your CF center.


Friday, November 13, 2009

Friday Fill-In!

Here is this week's Friday Fill-In! If you are interested in participating in this fun, Friday meme, click here.

1. The last band I saw live was several bands, including Steven Curtis Chapman, Newsboys, Jeremy Camp, and Sanctus Real, at Winter Jam 2007. (I don't go to concerts too often).

2. What I look forward to most on Thanksgiving is spending time with family!

3. My Christmas/holiday shopping is partly complete, but still a ways away from being completed.

4. Thoughts of passing my anatomy class fill my head WAY TOO MUCH.

5. I wish I could wear any type of shirts/dresses/outfits without worring if it "pulls" too much on my back.

6. Bagpipes played at my College Graduation this past May. It was very nice and interesting to hear...a fun vibe!

7. And as for the weekend, tonight I'm looking forward to getting some studying in, maybe watching a movie as well; tomorrow my plans include resting, studying, and running some errands; and Sunday, I want to try again to make it to church!

Tuesday, November 10, 2009

Scheduled

So today I scheduled my gallbladder surgery for November 23rd. I'm so anxious to get it over with...the pain is TOO MUCH! They aren't sure how much of the pain is related to the gallstone/gallbladder, but we won't know until it comes out. I'll be in the hospital for a little while, just because I'm post-transplant, but hopefully not too long. I may get admitted the day before as well, not sure yet. And thankfully, I will be on our transplant unit (they are supposed to reserve a bed).Hopefully this date/schedule will work out the best with my classes and work. We don't have class that Wednesday-the 25th (in which I have my anatomy lab class), so I won't have to miss any lab classes; hopefully just 1 lecture class. The following week starts final exams...lovely. I will be studying as much as possible while in the hospital (when I'm not drugged from pain meds).

The surgeon feels pretty sure she can do it laproscopically, but there is a chance she may have to convert to an open procedure due to alot of scar tissue I have and due to previous "stomach" surgeries. But I feel pretty confident it will all work out.

Apparently, I've had "gallstones" since December of last year. I had an ultrasound in December, and then again in January of this year, due to lung issues and other stomach symptoms. But everyone told me the ultrasounds were fine (including an ER doctor, transplant surgeon, GI doctor). The chief resident had the reports from those tests today, which he said showed gallstones. I was pretty ticked off about that. Not too happy. I spent a day in January in the ER throwing up bile from the gallbladder, fever, and in lots of pain. It's apparent now that it was probably a gallstone attack. Glad nobody figured that out, until now that is :)

Oh well...I just finished my inhaled TOBI and are off to bed before work tomorrow. Hopefully I will be able to post more stuff this week, but I wanted to do a quick update on the surgery. Thank you to those who commented on the previous post regarding gallbladder surgery experiences.

Friday, November 6, 2009

Shop with GoodShop!!!!

As you begin shopping for Christmas (and really, for any occasion you buy gifts for), remember to use GoodShop when shopping ONLINE! Goodshop partners with numerous popular online retailers such as Amazon, Barnes & Noble, Target, Walmart, Gap, Apple, and HUNDREDS MORE! These stores will donate a percentage of your purchase back to a charity when you use GoodShop.


To use, simply visit
wwww.goodsearch.com. In the charity box, enter "Cystic Fibrosis Foundation" and click "verify." Cystic Fibrosis Foundation will pop up and then you can begin to shop! You can link to the store of your choice and shop as usual.

GoodShop also recently launched a toolbar, in which you can download. By downloading this
toolbar, every time you visit the website and make a purchase, it will automatically be credit to the Cystic Fibrosis Foundation!

At last but not least, if you use GoodShop.com when searching the Internet (just like you do when you use Google, Yahoo, MSN, etc.), a penny is donated to a charity for every search. All you have to do is visit the website: www.goodsearch.com, enter "Cystic Fibrosis Foundation" in the charity box and begin your search like usual. This is such an easy way to raise some extra money without costing you anything!


And guess what??? So far, the Cystic Fibrosis Foundation has earned $12,100 using GoodShop!! WOW!!! So I encourage all of you online shoppers, to utilize this tool and help support the CF Foundation while shopping!

Thursday, November 5, 2009

Pain

I'm in so much pain, it's insane. I want to scream!!!!!! We are not sure how much of it is due to the gallstone or not? And unfortunately, my doctor yesterday didn't know anything else to do other than wait til after the surgery. I'm going to try to get back into an orthopedic afterwards as well.

My clinic appt was so-so. PFT percentages are about the same. My mid-flow is way down..down to 0.15 (almost non-existent)..ykes. My BP was really high and my oxygen sats were really low at 91%. Ever since my transplant they have been at 99 or 100. With this last hospitalization for pneumonia and inflammation in May/June, I had a lot of trouble with my sats. They were dropping at night below 90% and during the day were hanging around 90-93%. They have been low each time I've been to clinic since then but nobody has really said anything. Today I brought that up because I'm concerned. If you have an o2 sat of 90%, that could definitely be causing some of my shortness of breath. So my doc told me to come by the clinic each day to get it checked..yea, right, like I'm going to drive 25 minutes every day to do that. We have our own monitor but it needs a new probe and battery. So I'll just go that route!

My weight is down..i think the gallbladder has caused me to lose my appetite.

I feel good about my anatomy test last night...yay (or at least i hope)! Having a bad day today...had to stay home from work. Been sleeping all day, in tons of pain, headache, etc. My doctor "asked" me yesterday if I wanted an antibiotic? I'm thinking, that's not my decision, you tell me. But I told him I wasn't sure if the fevers were due to gallbladder, pain, or infection. So I am going to continue on my TOBI and see what happens!!! PLEASE PRAY for relief of pain...it's bringing me to tears and I hate taking all these medicines for it.

I will update soon, but haven't felt like blogging too much. I'm praying for all of you that are sick, in the hospital, or just need a little prayer uplifting! Have a great rest of the week!

Tuesday, November 3, 2009

Student With CF Wins 17K Scholarship


Solvay Pharmaceuticals announced the 2009 Thriving Student Achiever, Amanda R. In honor of the 17th year of the SolvayCARESSM scholarship program, Amanda was awarded an educational scholarship totaling $17,000. Amanda’s attitude about life is truly inspiring!

"CF is a part of me and who I am, but it runs alongside me and does not stand in my way," said Amanda Rudd, 2009 SolvayCARESSM Thriving Student Achiever and student at Salt Lake Community College, Salt Lake City, Utah. "Earning the Thriving Student Achiever scholarship has lifted some of the financial burden of attending college so that I can focus on my studies to become a dental hygienist.


"Solvay Pharmaceuticals congratulates Amanda on being named the 2009 Thriving Student Achiever," said Dr. Stephen Hill, president of Solvay Pharmaceuticals, Inc. "She embodies the positive attitude and spirit of all of our outstanding scholarship recipients, who are each role models for the CF community."

As a fellow CF patient, I think you’d love to watch Amanda’s video! Click
here to view her video and list of accomplishments! (I tried embedding the video but it didn't work..sorry)!

Since 1993, Solvay Pharmaceuticals has donated more than $2 million dollars in scholarships to high-achieving students with CF. For more information about the SolvayCARESSM Scholarship program, click here!

Monday, November 2, 2009

Gallstones, really?????

So...here are the results from my GI tests I had done last week. Very surprising....and totally unexpected. The tests were ordered to check out the fluid around my liver to make sure it was not anything bad. I had the tests (ultrasound and Doppler of abdomen and associated organs) at our Children's hospital which was kind of nice. The technician I had actually performed some tests on me back in 2003, and he remembered me. We had some great conversations and he was the nicest person. It was kind of nice being in a "children's setting" again.

Evidently, the fluid is fine. Some of it is pelvic fluid, and is apparently just there because I'm a female. And some of the other abdominal fluid is "sympathetic" fluid and supposedly a lot of CFers have some. So no worries in the fluid department. Now, for the shocking news: I have a BIG (4.22mm to be exact) gallstone (and possibly more that are just unseen). The ultrasound made this evident, but it it is believed that it has been there for sometime because ultrasounds don't always show gallstones. Unfortunately, the stone is too big too pass. I am having surgery to remove it (and the gallbladder from my understanding) the 2nd week in December right after semester exams. My GI doc feels like it can wait til then and really wanted me to be able to finish up the school semester. I'm with him on that decision!!! I have a consult with a surgeon at UAB who will be performing the surgery probably sometime this month. My GI doc can't do the surgery, because he only has admitting privileges at the Children's hospital. In addition, because of transplant, I have to have it at UAB. I will be on transplant services, and the surgeon will just consult everyday. From what I've read and been told, the surgery isn't too big of a deal, but I will be in the hospital for a little while. I think I will feel so much better.

As I researched more on gallstones, it sounded like I've been having gallbladder trouble for awhile. Back in January I spent a whole day in the ER throwing up bile (TMI sorry) and I had several tests indicating my gallbladder was not emptying properly. It was a "bad" winter/early spring in the stomach department. But for some reason it took until NOW to figure that out. I've had multiple ultrasounds, but without contrast. And without contrast, it is difficult to see gallstones. Having gallstones can also cause fevers and mild to severe back pain. And most of us are attributing some of my severe (putting me to tears) back pain to this gallstone. So I'm ready for that to go away. My weekends and whatever time I have free, I'm usually laying down with heat on my back, and taking Ultram, Lortabs, Aleve, muscle relaxers, Tylenol, etc. I'm so tired of being in pain. The pain may not all be related to the gallbladder, but I am definitely interested to see how much of it is. I hate that I have to have the surgery. At least it won't interfere with school, but it means taking at least 1 week off work, during our busiest time of the year. But oh well, you got to do what you got to do, right?

So that is basically the gist of the results. My liver is enlarged a little due to the gallstone. I have "ascitis" of the liver. So that should go away after the gallbladder is history. I also started on Actigall to help remove other small stones and "sand" which apparently my GI doc thinks I have as well. It will also help to prevent future gallstones. I looked up ways to prevent gallstones at home, and there really isn't much you can do. It did say to make sure you eat, that starving yourself isn't good. Not that I starve myself, but I do have days when I feel sick or times when I'm in the hospital that i will go for a good while not eating or eating very minimal. It also said to avoid foods that are very high in fats. I do a pretty good job of that already. So we'll see!!!

Have any of you had your gallbladder removed? I know it is common among CFers. I would love any feedback, suggestions, etc. The surgery is laproscopic, but I haven't had any surgery, per se, in about 3 years...so a little nervous. I'm also a little worried about the whole putting to sleep thing since my lung functions are not good. I'm sure there is nothing to worry about!




Sunday, November 1, 2009

November Already???

I can't believe it is NOVEMBER!!! Time Flies!! Did everyone enjoy their extra hour of sleep last night? I have always said that (in school terms) the fall semesters go by much quicker than the spring semesters. I apologize for not much blogging still. I did manage a few more posts this past week than before. This upcoming week is crazy, with something every night after work, so the blogging, once again, may be few this week.

My anatomy test last week was ok. I don't think I failed it, but neither did I ace it. I should find out tomorrow night what i made...keeping my fingers crossed that all the guesses were right :) I have another anatomy lab practical test this Wed night. This class is driving me INSANE and stressing me out big time. After this week's test, I don't have anymore until the last and second to last week of the semester (December).

I will be venturing to transplant clinic this week. I have not been feeling good at all. My throat is really sore, coughing, sob, no energy, etc. The results from my GI tests last week will be reveled in a post TOMORROW....definitely check it out, very interesting!


It's been a lazy weekend. I've been resting after a busy and hectic week. I attended my cousin's senior concert on Friday night. He is part of Auburn Singers (their university choir) and each senior is required to put on a concert with them only. He is such an awesome singer. We had a reception afterwards (my Mom helped with the food) for him, which everyone enjoyed! I didn't make it to church, once again, UGH!!! I passed out candy to the trick-or-treaters last night. My favorite was a little boy (probably about 1 or 1.5 yrs old) that was a UPS Man. ABSOLUTELY ADORABLE. Here is a picture of me, my brother, and cousin (Christopher who i mentioned above) one Halloween. I think it was around 1990, but don't know the exact year!

Oh yea: Not sure if I mentioned this last week or not, but we transplanted again last Tuesday night. The girl is doing great! But please keep her in your prayers. She is alone, has no family and no friends with her. Her Dad recently passed away and her Mom is in stage 4 cancer. One of my dear CF friends, Brandi, has been her angel, visiting her every day, multiple times a day. Her phone number is the "emergency" number left with the nurses. We've talked about trying to come up with a plan, because you can't go through the transplant recovery process alone. You need someone there to help you physically and mentally. I know the nurses will take good care of her, but it's not the same without a friend there. So please pray for this situation. She is in good spirits and doesn't regret anything. But I know deep down, she wishes she had someone to support her as well as her mother there with her.

I have a busy week! It is filled with work, doctor's appointments, class, a wedding Friday night, and much more!!! I'm praying I have the energy to make it through. I hope everyone has a great and blessed week!