Gameroom Give-away!

Microsoft has partnered with Children’s Miracle Network to provide three Children’s Miracle Network pediatric hospitals an Ultimate Gameroom experience – and we need YOUR HELP to decide which three lucky hospitals will receive this great giveaway and better yet, YOU could win an Xbox 360 as well!

Cast your vote for the Children’s Miracle Network hospital of your choice, each time you vote you will be entered to win an Xbox 360 – the more you vote, the better your chances of winning!You can vote up to 10 times per day. If you do not have a Children's Hospital locally, I would love for you to vote for the Children's Hospital of Alabama. We could really use the activity/game room for our patients! We do not have a whole lot to offer in that respect! But our Children's Hospital is considered one of the top in the nation, and our CF Center (which is associated with our UAB CF Center/research center) is one of the leading ones in the country! We have been selected as one of the 2009 recipients of the annual Cystic Fibrosis Foundation's Quality Care Award: Recognizing Outstanding QI Processes and Accomplishments.


The Children’s Hospital of Alabama is the 10th busiest pediatric medical center in America with, recording more than 670,000 patient encounters annually. It is home to a state-of-the-art diagnostic center, a Level 1 trauma center, the largest pediatric burn center in the Southeast and is a national leader in many programs including minimally invasive surgery, neurosurgery, nephrology, hematology/oncology, and pulmonology. The research programs conducted here rank in the Top 10 of NIH funding each year. In 2007, it earned the prestigious MAGNET certification and in 2011, will celebrate its 100th birthday.


Thank you for your support! Whether you are voting for the Children's Hospital of Alabama or one located in your state, this is an awesome opportunity!

Recap: About Me

So I thought I would post some of my first original posts about me! There were 4 posts total, so I am going to repost these posts starting today! I have so many new readers, that I thought it would be beneficial!

So..here it goes: About Me Part I.

I was born in February of 1985. I have 1 brother, who is 2 years younger, who DOES NOT have CF. I have 2 wonderful and loving parents and a very supportive family. My Dad is a Vet, and my Mom is an occupational therapist. There is no trace of CF in my family.

I was diagnosed with CF shortly after birth. I had an intestinal blockage at birth, which was the 1st indication I might have CF. I was able to live a fairly normal life until the age of about 7. At that time, I began doing CF therapies and added some additional medications. I also went in the hospital for the 1st time for a CF "tune-up." For those of you who don't know, CF patients go in the hospital for "tune-ups" where they receive IV abx (antibiotics) to help give them a boost and to feel better. I was then able to wait another 3 years, until the age of 10, before I had to go back in the hospital. I've always attended a public school, and was able to have a fairly normal every day routine and life like any other kids at that time.

I danced when I was little and in preschool! I started gymnastics when I was 5 years old and continued until I was 11, in the 5th grade! I LOVED gymnastics, and would have continued it if it wasn't for the g-tube placement.

At the age of 10, my CF started to get progressively worse. Hospital visits were more frequent and I was having trouble keeping up with day-to-day things, especially physical activity and weight gain. In the 5th grade, I went in the hospital about 3 times that year. I also got a feeding tube to help with gaining weight and nutrition. From about the 5th-grade until the 8th grade, hospitalizations were about every 3 or 4 months and things really started to go down hill. Beginning in 5th grade, I started wearing oxygen at night, which greatly limited slumber parties, etc., with friends. Nevertheless, I still attended a public school and was part of many school organizations, Honor Society, advanced classes, etc. I wanted to be as normal as possible. Until about the 8th grade, I never told any of my friends I had CF. They just thought I got sick frequently. My family and I were and still are very strong in our faith of Jesus Christ, which makes these situations so much easier to handle and endure. In the 8th grade, things began to change dramatically.

In January of 1998, I went in the hospital for a what was supposed to be 10-day tune up. During this stay, I "caught" the flu (yes...in the hospital), which made my health take a huge turn the wrong way. I spent 5 1/2 weeks in the hospital that time (which included my b'day and Valentines' Day). The decision was also made for me to get evaluated for a lung transplant. I had just turned 13 at this time. This was a huge shock for me and something I did NOT want to do. But I didn't have a choice and my parents made my decisions for me. In spring of that year, I traveled, along with my parents, to St. Louis Children's Hospital to be evaluated for a double-lung transplant.

To be continued.....

Friday-Fill In

Time for another Friday-Fill In! Click here to participate!

1. One week ago I was completing another Friday-Fill In post.

2. I took gymnastics when I was young.

3. Mama told me that she loved me.

4. Do you remember when you and me went to the state fair last year?

5. Take your time when you eat, don't rush or shove your food down to quick!

6. This phase will pass!

7. And as for the weekend, tonight I'm looking forward to relaxing and watching a TV/movie, tomorrow my plans include running errands, lunch with Brandi, preparing for my babysitting San Francisco trip and of course studying; and Sunday, I want to really try to make it to Sunday School and Church!

I hope everyone has a great weekend!!

Take Back America

I’ve heard so much “It’s just hopeless; there’s nothing I can do.” That’s the way a lot of Americans feel; but, we CAN do something. Besides praying for our country, we need to do everything we can to turn it around.

How to Take Back America Conference webcast live this weekend at AFA.net (September 25-26th)

The event begins this Friday morning and ends on Saturday evening. The entire conference will be streamed live on AFA.net.

The AFA (American Family Association) has joined together with a consortium of conservative organizations to host a top-rate, momentum building, leadership conference that will teach the grassroots how to use the Internet and how to connect after the conference using new technologies like "Webinar," as well as equip them with talking points on battle-front issues and record every workshop. Here is your opportunity to see every great workshop and speech given at this year's conference.

Review and choose the workshops you want to see - at no cost!
-How conservatives can win in 2010
-How to deal with vote fraud, the Census, and ACORN
-How to lobby federal legislation & policy
-How to bring youth into the conservative movement
-How to defend traditional marriage and DOMA
-How to understand Islam
-How the media can help us take back America
-How to stop feminist and gay attacks on the military
-How to counter the homosexual movement
-How to stop the entry of illegal aliens and drugs
-How to deal with global warming, cap and trade
-How to stop the killings: pro-life solutions


WHO IS AFA?
The American Family Association (AFA) was founded in 1977 by Donald E. Wildmon, who was pastoring First United Methodist Church in Southaven, Mississippi, at the time. The American Family Association represents and stands for traditional family values and exists to motivate and equip citizens to reform our culture to reflect Biblical truth on which it was founded. We believe that God has communicated absolute truth to man through nature and the Bible, and that all men everywhere and at all times are subject to His authority. Therefore, a culture based on Biblical truth best serves the well-being of our country as evidenced by the vision of our forefathers as set forth in the Declaration of Independence.

Today, AFA is one of the largest and most effective pro-family organizations in the country. The impact of AFA on pro-family issues is recognized nationwide. It is AFA’s goal to be a champion of Christian activism.

To that end, AFA spurs activism directed to:
* Preservation of Marriage and the Family
* Decency and Morality
* Sanctity of Human Life
* Stewardship
* Media Integrity

Click here to learn more about AFA, how it has made an impact on our nation, AFA’s recent accomplishments, and how to sign up for AFA action alerts and special projects!

Decisions

WOW!! My mind is overwhelmed with decisions that need to be made or will need to be made in the near future! I just got home from my anatomy lab class, and don't feel up to writing the entirety of several issues! But briefly, these decisions involve my health, and basically my entire future. Decisions that I really didn't expect to have to make! And still praying I won't have to make them. But I have to be prepared just in case!

There was no evidence of acute rejection from my bronch. Good? Yes and No. Bad? Yes and No. Bad in that we don't have anything acute to treat. Good in that my lungs are not acutely rejecting! What are the causes of very low PFT's (my PFT's have been declining a good bit over the last 2-3 years),non-response to the IV antibiotics, multiple pneumonias and infections this year: UNKNOWN! Possibilities: SEVERAL. I will begin doing things (tests, etc.,) to rule out these possibilities, but in my eyes, I would rather one of these possibilities be positive, in fear of what the final and last diagnosis is, which would basically be a progression of my chronic rejection of lungs, which was diagnosed in 2006. (But in reality, that is not a good diagnosis, and I don't care what is wrong, I just don't want that answer). I'm not ready to decide my entire future, just yet!

Step #1: Liver tests! Evidently,there is fluid around my liver. I guess they saw this either in the recent CT scan or bronch (not sure). I have NEVER had any issues with my liver or kidney, and never had any lab values indicate that there are issues. But in reality, something being wrong with my liver, could indeed, be the best possibly diagnosis in the great scheme of things.

I kind of want to cry, and sort of don't. I never give up, and will not accept the final and last diagnosis until we've exhausted all other means! And that view stands among all of the UAB Transplant Team!

In other news, I bombed my anatomy lab test..UGH!! Needless to say, I will be studying my butt off all weekend studying EVERY SINGLE muscle in the body, it's origin, its insertion, its action, its nerve supply and finally, yes finally, it's arterial supply! That shouldn't be too hard right? Na, piece of cake! Yea, right :)

Until my next post! All I can ask for now is prayers! I'm sure many of you can read between the lines on what I'm talking about. If not, then I will post about it sooner or later!

Update on grandfather: still hanging on by a THIN, THIN, THIN thread! But not responding to anything! Just waitin on the Lord to take him home!

Bronch

So yesterday I had a bronchoscopy (can't remember if I mentioned it on here or not). The procedure went pretty good for me. It always takes a LOT LOT to sedate me! And I usually sleep for 2 days straight. I did make myself get up this morning and go to work, which ended up being ok!! I still feel a little drugged though :) I did get sick in recovery yesterday, which was awful, but it went away pretty quickly!

So far, nothing has grown out of the bronch cultures, but it takes about 3-4 days to really know for sure. I did find out that my CT Scan showed some fluid (or as they called it "infusion" in my left lung (lobe). They haven't decided what they want to do about it yet. They don't think that it is causing any of my current symptoms, such as shortness of breath!

I finish my 3-weeks of IV abx Thursday. I finish my month on of TOBI tomorrow! The transplant team will be discussing my case at their weekly meeting tomorrow morning. I'm anxious to see what they say, hoping there will be some course of action to help me feel better. With the exception of no fevers, I really don't feel much better at all. And it is getting extremely frustrating! I had to miss an anatomy test last night because of my bronch!

I will update on what the transplant team decides on tomorrow, or as soon as I know!! Thanks for all of your prayers!

My grandfather is still hanging on by a thread. He is now (as of really Sunday) not responding to anything, and is basically in a coma. He doesn't recognize anybody, he is not speaking nor eating. I guess the Lord just hasn't decided yet on when to take him home. He doesn't look good, and his breathing is awful today! I'm praying he is not in any pain! The whole family situation with my step-grandmother is a little better. By no means, is there no disagreement, and frustration with her by everyone, but I think most of the family is at peace with the decisions, which is a blessing!

Seasons Change

It's time for another change of seasons! Today, September 22nd, is the first day of Fall/Autumn! Fall is such a beautiful season (most of the time). More often that not, Alabama usually does not get much of a Fall season. We usually go straight from summer weather into winter weather. When we do get a Fall season, it's usually not for more than a month or so, but is really beautiful when we do! The weather is so comfortable as well. Maybe this year we will be able to enjoy some Fall weather and scenery, since our August weather/summer weather was cut short! It has been raining here EVERY DAY for about the last 10 days or so.

So here is a little bit of history: Fall officially gets underway with the autumnal equinox, the date in September when hours of day and night are roughly equal. Of course, just because the calendar says it's the first day of fall doesn't necessarily mean that your state, city, etc., will experience fall temperatures--nor fall colors--on that date. There are many natural factors that influence the progression of the fall foliage season

Here is a fun "Fall" crossword puzzle if you are interested! Click here to access it!

Here is a great site for parents of younger children for fall activities, including coloring pages, mazes, puzzles, word scrambles, crosswords, quizzes, science and math challenges, and MUCH more!

I hope everyone enjoys their first day of Autumn!!!!

CysticFibrosis.com Resources

Got Questions? Ask the Community!
The following are some of the current Hot Topics in the forums. Follow the links view the postings & then Post your own comment - or just see what are saying!

Should I Be Scared?
"Hi, I have been reading about CF being progressive, and this has placed doubts in my mind. I was diagnosed about a year ago at age 32, so I am still fairly new to this. Moreover I am in a foreign country, so when I go to see my CF doctor I am not clear on everything he has to say..." Click Here to Read More

Taking Enzymes at School
"Our 5yo dd w/cf started Kindergarten last Thursday. Months ago, I asked my husband about putting together a 504 plan or at least talking to the school about her CF. She is relatively healthy. Her biggest issue is getting her to eat enough to grow. He thought it wasn't necessary, we could deal with the issues if they came up..." Click here to read more

Don't Forget There is more to CF.Com
"Just a gently reminder that besides the threads we have tons of resources...
Clinic Trials, Picture Gallery, Remembrance Board, Videos, Google CF News Alerts, Blogs... our newest work in progress the MediWidget and much much more!" Click here to read more!

CF MediWidget

The excitement is building as the HOLs (Health Opinion Leaders) build the database for the Ultimate CF Search Engine.*** We've added a new Equipment search feature, with seventy-five pieces of CF-related medical equipment. Click to learn about the durable medical equipment you are using in your daily treatments.We will be adding new features and new categories of information, including safety information about CF medications during pregnancy. Furthermore, we'll be opening this up as completely interactive tool which YOU can contribute to!

CF Past Poll Results

Visit CysticFibrosis.com's FAQ section to find answers to MANY common questions regarding CF, treatment of CF, CFRD, insurance, lung transplants, sweat tests, TOBI, purchasing CF bracelets, the future of CF, research, making donations, MRSA, Pseudomonas, CF mutations, PFT's, how to clean equipment and MUCH MORE!!!

Grandfather

I wanted to give a quick update on my grandfather! We have continued to struggle in disagreement regarding treatment for my grandfather! It has been a family battle against his wife (my step-grandmother, etc.). My grandfather did start doing better, but she (wife) still wanted to stop treatment, even after the doctor told her that this was not "that" type of situation! That he could recover and be fine! When the doctor told her this, it was good news for the rest of the family, hoping that she would change her mine. In addition, my grandfather was alert and could understand/comprehend the situation enough to make a decision himself. And for her to stop treatment, would technically be illegal.

On Thursday, we found out that my grandfather had contracted pneumonia (hospital-based), and his kidneys were not filtering properly. They started him on antibiotics for the pneumonia, as well as supplemental oxygen! And he really started improving, and he said he felt so much better! However, yesterday morning (Friday), my step-grandmother, once again, decided that all the antibiotics and treatment needed to be stopped. That this would just prolong the pain and suffering from him, and there was no point in trying to "make him better." Everyone in the family (well, except for one of the sisters) was in complete disagreement! My parents, as well as my uncle, talked to my grandfather yesterday, and he was telling them how he was not ready to get on that "train" yet! That he had been praying to the Lord for exactly a day and a half, asking for God's guidance, and what he needed to do. My grandfather (I call him PaPaw) said that the Lord gave him that answer, and told him to keep fighting. PaPaw said that he was at the bottom of the ladder, but after praying, he had begun working his way back up! To me, that shows that he is not ready to die, and he wants to fight this if all possible.

However, my step-grandmother (she is really my grandmother I guess, since she married him before I was even born) had a different opinion. So she discussed with the case-manager yesterday morning, convinced one of the doctors to agree with her, and made the decision to call in hospice, and discontinue all treatment. He was started on morphine pump within minutes (and yet he was in no pain). Between yesterday and this morning, my parents, and my aunt and uncle, have been praying and trying to decide on what to do. How do they turn around the decision and prove to the doctors, but mainly my grandmother, that PaPaw was not ready to go home. That we was plenty alert to make a competent decision. My uncle spent the night with him last night. And he straight up asked PaPaw if he was ready. And PaPaw said no, that "what harm could the antibiotics do"?

Then this morning rolls around, and PaPaw is not doing well. He is much sicker, not very alert, confused slightly, and just sort of "out of it." One of the doctors still called my grandmother to tell her that this was treatable. However, she still said that she didn't want to prolong this for him. I'm so furious with her!! It's unreal! And it was like it was almost a blessing in disguise for her that he was worse this morning, so we would have a more difficult time "arguing" or disagreeing with her.

However, after my mom and uncle talked a little while ago, they decided not to fight my grandmother any longer. PaPaw is really a lot worse this morning (of course it's probably because they stopped the antibiotics. Pneumonia can eat anyone up quick without treatment). Therefore, it's just a matter of time. Maybe hours, maybe days, who knows! We are all fine with God taking him home when God is ready, and we were fine with letting a natural course decide PaPaw's death, but not a decision like this. However, we know God is watching over him. PaPaw is going to Heaven. He has lived an awesome 95 years, and was always going strong. But now his time has come to grace the gates of Heaven!

So I ask for your prayers, for PaPaw to die peacefully, to not be in any pain. I ask for prayers for his 4 daughters (one of them being my mom) and their families. This has been a very tense situation from the get-go, and has caused a lot of stress among family. (which I don't blame...it's caused me stress too). And I guess we need to pray for my grandmother. Especially for her spiritually, that she will learn how to trust in the Lord, and hopefully know where she is going when her time comes. Based on these last few weeks, her actions have not demonstrated love for the Lord, and she has not shown her love for her husband or family in a God-loving way.

Thank you to those who have already been praying for my grandfather! I did go down to the hospital last night (gloved, gowned, and masked) and visited with him for awhile. He was perfectly alert and had remembered things I had told him or things my mom had told him about me from MONTHS ago! He told me how proud he was of me and how he wanted me to promise him that I would be careful on my upcoming trips. He had looked at my cruise pictures a few days ago, and told me how beautiful I was. I've always loved him so much..he has had the perfect attitude, and always handled me and CF great...never pressured me, never freaked out, always loving!

Sorry for the long post. This is going to be a tough week, tougher than it has been! I'm also still fighting off this respiratory infection. I have a bronch on Monday, which really needs to be done, but may have to be postponed. I'm not sure what to do in that situation!

SolvayCares Scholarship

In the United States, Solvay Pharmaceuticals has been helping people with cystic fibrosis (CF) manage their health for more than 20 years. Our SolvayCARESSM program expands this tradition, offering comprehensive support to CF families through nutritional, educational and financial resources.

Recognizing the financial burdens that exist for many CF families, we developed the SolvayCARESSM Scholarship to honor young adults with CF as they pursue goals of post-high school education. Since 1993, we have awarded scholarship funds totaling more than $2,000,000.

The SolvayCARESSM Scholarship was created to honor young adults with cystic fibrosis as they pursue goals of post-high school education. 40 SolvayCARES Scholarship recipients, one of whom will be named the 2009 Thriving Student Achiever, were selected to receive $2,500 for use during the academic year. As a special recognition for the amazing achievements of this year’s scholarship applicants, every eligible 2009 applicant was honored with a $500 scholarship. As a result, nearly 250 students are receiving educational funding this academic year through the SolvayCARES Scholarship program!

Furthermore, to celebrate the 17th year of the scholarship, this year's Thriving Student Achiever will be awarded $17,000! Voting for the Thriving Student Achiever starts today and ends October 15th, click here to vote. You can vote online, call toll free or text so be sure to check out the site to learn more.

Please help spread the word about this program and encourage voting is most appreciated!

Here is a video montage of the student's artwork from the scholarships!

Friday Fill-Ins

Here I go again with another Friday Fill-In! Click here if you would like to participate!

1. My car gets awesome gas mileage and drives so smoothly...i love my car!

2. My anatomy lecture class 1st major exam is coming up next Monday, as long as I wake up from my bronchoscopy.

3. Lately, things seem crazy, hectic, and hard to understand why they are happening. I know God has a reason though, and hopefully things will turn around soon.

4. The Lake is one of my favorite 'hiding' places.

5. What happened Wednesday morning was amazing and so God-driven, regarding my grandfather. It's amazing how God works little things into situations.

6. Finding a cure for CF is not impossible!

7. And as for the weekend, tonight I'm looking forward to relaxing, but it will be coupled with studying; tomorrow my plans include resting and studying and Sunday, I want to really be able to make it to church!

Clinic Report

So...LONG MORNING at transplant clinic. My doctor decided to extend the IV antibiotics another week. I had a CT Scan appointment this afternoon at 3:00 to make sure everything was ok, and to follow up with the inflammation from back in June. However, I ran home to grab a bite to eat, and rest for about 30 minutes. I felt horrible, nauseated and had a low grade fever. I couldn't' get up to get back down to the CT scan. So therefore, I missed it. There was just no way I could be down there for another 1-2 hrs (depending on when they took me back), then back at class, with my exam. I didn't leave clinic (or rather didn't get home until about 1:30pm. My coordinator said she would try to reschedule it for tomorrow.

I am also having a bronchoscopy next Monday (or sometime in the next week or so). My PFT's were down a good bit. My FEV1 was 33% (down from 39%); my FVC was 35% (down from 41%); FEF25%-75% (which our transplant team looks at, was 0.66 or 20% (down from 0.88/26%....not good). My lab work was ok for the most part. I still have a really low WBC count, but it has come up a little bit. My magnesium level was 1.4, so I really need to get that up. If it drops anymore or doesn't go back up, then I will have to get IV magnesium. My chest xray was unchanged from my last appointment. My 02 sats were only 92%, which I meant to ask about, but forgot. So all in all, definitely a not-good feeling kind of day.

My doctor still isn't sure exactly what is going on (causing the fevers, sob, cough, etc.). My previous cultures showed sensitivity to the antibiotics I'm on, so there is really no point in changing them. Hopefully the bronch and ct scan will provide some insight.

On the up side, last night my uncle ended up talking with the doctor who is handling my grandfather's case (he just happened to be there when the doctor came in). He knew the situation, and told my uncle that "we" were definitely not dealing with an end-life thing here, and there is no-way that he (the doctor) would let that decision be made under his care (meaning he will not discontinue the antibiotics). My grandfather has been doing good today, even managed to do some rehab. But I know there have been some major issues with my step-grandmother (according to my Mom)today as well. I will know more later!

My Anatomy Lab practical exam was HARD!! And coupled with feeling crappy, including a head that felt like it was going to explode, it didn't go as good as I wanted. I didn't fail it per se, but wanted to make an "A." It was pretty tough, but hoping I pulled out of it with a "B". We'll see! Now I have to study for my anatomy lecture exam on Monday...UGH! I missed/skipped tonight's lecture class (which is right before lab class). I hope that is not going to hurt me upon taking the exam next week.

Inhumane Treatment???

My grandfather (whom I mentioned had a stroke last week) is in pretty critical condition..well, sort of. Critical condition from a different perspective. He is 95 years old and has had a pretty healthy life. He has been in a retirement/nursing home, but on the independent living floor, with minimal nursing assistance. The stroke he had was caused by an infection/abscess on his head (melanoma). He has had this skin cancer for several years now, but it has not really caused any trouble. The infection caused swelling in his brain, which caused the stroke. The treatment: IV antibiotics for several months.

Unfortunately, my grandfather gets very confused when he is in the hospital. (this happens to a lot of people, and hey, he's 95!!). It has been sort of critical lately, and his wife (2nd wife due to loosing his wife to cancer in his 40s) has decided that he basically doesn't need to live any longer, and she wants to stop/discontinue all antibiotics. This has been very trying on our family. My Mom, along with her other 3 sisters are having a tough time. And one of the sisters is in complete agreement with my grandmother ("step-grandmother"). He does not hallucinate all day, nor is he confused the entire day. He has been fine around my mom multiple times, and is being as normal as a 95-year old person can be. He has had some bad episodes, which I understand is hard to "watch.", but it hasn't necessarily affected his "health/recovery."

My grandmother doesn't want to let him do anything. He asked to shave, she told him there is no need to. So my grandmother met with a social worker and doctor to voice her final decision (not even discussing it with 2 of the daughters (my mom and aunt); This is very heartbreaking for me. It's not like my grandfather is on life support (ventilator, etc.). But if he doesn't receive these antibiotics, then he will die, and it will be a painful process. The doctor said after the infection clears (or clears up as much as it can), he will be back to his "normal" self. He has a PICC line, allowing him to finish the IV antibiotics back at the retirement home or skilled-nursing facility. We are not sure if he is competent enough to understand exactly what "she" (grandmother/wife, etc.) wants to do. I feel so sorry for him. I know he is old, but this just seems wrong to me...inhumane treatment. My grandmother I guess is just tired of taking care of him, although she does very little. She claims she is exhausted and that "this" has been going on for about 10 years, with the last 3 being the worse. And this is a bunch of CRAP!!! I don't think she really "loves" him in a God-loving way right now. And it seems that she has clearly not prayed about this situation at all. We (the entire family) are praying and trying to seek God's word and guidance in this situation. But it is a very difficult one, and hard on the daughters, as two of them are against their step-mother's decision.

If you could please pray for my grandfather, for his health and the infection to get better; but also for the right decision to be made here, and preferable, everyone be in agreement. If the antibiotics are stopped (or I guess I should say when they are stopped, since she says that is a final decision), that the "dying" process will not be painful. That God will comfort him and ease his suffering. I haven't been able to visit him (yet), because I've been pretty sick and do not need to be at a hospital setting.

Here are a few pictures!

My mom and I with him this year-Father's Day.

Father's Day in 2008-My Mom and Aunt

Holding his great-granddaughter: Katherine/Katie (last March) (#13 great-grandchild)

Tuesday Tid-Bits

I've seen this done by Erin over at Livia's Hope. I thought it would be appropriate for my post today! And I apologize for the lack of blogging lately!

So...I have almost completed 2 weeks of my IV antibiotic: Ceftazadime/Fortaz. Thursday morning will officially be 2 weeks. I have also completed 2 full weeks of oral Cipro, and 3 full weeks of inhaled TOBI (with 1 week remaining). Unfortunately, I have not really felt much better. The fevers would seem to go away, but then randomly spike again; i am extremely short of breath (thought I was going to pass out last night after walking to class); my body is severely shaking; occasional coughing, and just overall major fatigue and BLAH feeling. So my doctor and transplant coordinator want me back in clinic tomorrow. Usually by the end of 2 weeks of antibiotics, I am feeling SO SO much better.....that feeling usually kicks in well within at least a week. However, this time, no such "kick in-effect" has occurred. I know they are still trying to do everything they can to keep from admitting patients, due to the flu and swine flu cases.

I have a MAJOR, MAJOR, did I say MAJOR? Anatomy Lab Practical Exam tomorrow night! I've been studying, but due to work, classes, and being sick, I haven't studied as much as I would like. And to top it off, I haven' gotten much sleep lately. The last 2 nights I've stayed up studying until 5am. Then up for work at 7am. I'm very nervous and still have some items to study. The test (non-multiple choice-straight fill in the blank-like answers--really not even fill in the blank) covers every bone in the body, every bone marking in/on the body (foramen, fossa, condyles, tubercle's, sutures, etc.), the types of tissues in the body (their characteristics, functions, locations...and being able to identify them from a slide), and FINALLY....every joint in the body!! Lovely huh??? I would appreciate all the prayers I can get! For God to give me the ability to retain all of this knowledge; to not worry or stress out to much, where my mind goes blank or freaks out tomorrow night; and just for confidence in doing well on the exam! Our lab teachers informed us that the majority of the lab students make a high "D" or low "C" on the first exam. YIKES!!!!

I have my 1st Anatomy Lecture Exam next Monday. I plan on cramming for that Thursday-Sunday this week. I can't study for it before the lab practical.

Work has been crazy, but I've managed to make it through the day (although I probably should be resting).

My brother contacted the swine flue last weekend/week. I am glad to say that he is now over it and feeling much better.

It has literally rained here for the last 7 days, it seems like. And it really likes to rain during class times..ugh!!!

Filler R IN

So I thought I would give one of these "Friday Fill-Ins" a try, since I miss doing the Grilling Goodness Fridays! So here it goes! If you would like to participate, you can click here!

1. That's a great place to be.

2. HEY YOU!; I'm over here!

3. The possibilities include: forever and ever.

4. Hot Chocolate is one of my favorite cool day recipes.

5. How will you know what I look like?.

6. Winter and a stormy sky.

7. And as for the weekend, tonight I'm looking forward to getting a good night's sleep, tomorrow my plans include studying and Sunday, I want to sleep and have some fun, but will be studying instead!!!!

Dan, a CF Dad, has decided to do a health care discussion on his blog! Please join him on Thursday with your comments and discussions (this will not be a debate) on this subject!

What: Strides to Cure Found Health Care Discussion
When: Thursday 3 September 2009
Where: Strides to Cure Found Blog

Labor Day Update

Wow....it's been a LONG week!!! I started the IV abx Thursday evening after the home health nurse accessed my port. As I said previously, I'm only doing 1 iv abx since I'm doing the inhaled TOBI and still on the oral Cipro. The iv abx (Fortaz/Ceftazidime)is every 8 hours, hence 3 times a day. Since Friday (and this past Wed and 1/2 of Thursday), I have slept pretty much the entire day. I've been so exhausted! I hate sleeping that much, but I can't really seem to go without taking several naps during the day. So basically I've just been sleeping and hanging out watching TV or on the computer. I did spike another fever on Saturday, but it seemed to be short-lived.

Today I decided that I would try and get out of the house for a little bit, since i am planning on returning to work tomorrow. So I managed to shower and get ready to run a few errands, which included Target, and shopping for a cocktail dress for an upcoming CFF Wine Opener. About 30 minutes into shopping, I started feeling awful...and really awful. I got lightheaded, nauseated, and was breathing extremely hard. After shopping at JC Penny, I decided to run through McDonald's to get a coke and fry to see if that helped...not much, but a little. I made it through Target, barely, with stopping every few minutes to catch my breath. After Target, I returned home, as I couldn't stay out any longer...I felt so bad. I am so frustrated now, and don't even know how I'm going to make it to work tomorrow, let alone class Wed night. I expected to feel the GOOD effects from the antibiotics by now.

I'm hooked up to my Fortaz now, and are about to take a nap. I was trying to go through the day without napping, but doesn't look like that's going to happen now. My back is also in extreme extreme extreme pain.

I had planned on going to the lake...but it didn't happen. My grandfather had a stroke Sunday morning, so my parents spent most of the day Sunday down at the hospital with him. My parents did drive down to the lake today, but I opted to stay home. But I'm going to try to go next weekend (even though I'll still be on iv abx).

Well....I'm off to nap now! If you feel led, please pray for a MUCH better week this week, that I will be able to go to work and class Wednesday night, and that I gain some much needed energy! Thanks!

Kreativ

Sweet Katelyn gave me this Kreativ Blog Award! Thank You Katelyn!! I really admire you and you are such an inspiration to me! I feel like we are able to relate to each other quite frequently! Oh..and you take such awesome care of your CF...you amaze me at how healthy you are!!!!



Here are the rules for the award:

Thank the person who nominated you.
Copy and paste the logo on your blog.
Link the nominator on your blog.
Name seven things about yourself.
Nominate seven "kreativ bloggers".
Post links to the nominated blogs.
Leave a comment on each of the blogs

Ok..so here are 7 things about me...
1. I am only a whopping 4 feet, 11 inches tall!!!
2. I have a 22 yr old Brother!
3. I graduated this past May with a BS in Health Information Management. I am now working on my 2nd degree: BS in Nursing...and can't wait to graduate again :)
4. I do not like any kind of tea to drink...gross!!!
5. I do not like fruits or vegetables either...i know, not very good!!!
6. I love love to go to the lake...water ski, tube, and just laying out on the pier!! It's very relaxing! (hopefully I'll be going there today after church)
7. In the 6th grade, I got "silent lunch" because I convinced a friend of mine to pull this chair out from underneath this other friend of mine. This was my 1st and LAST time to ever get in trouble!

I nominate the following 7 "kreative" bloggers:
Amy @ My Journey with CF
Cara @ Cara Monster
Kellee @ Our Story
Casey @ aCASEYofCF
Kori @ My Life as a CFers wife
Summer @ Let Your Life Speak
Lauren/Alexandria @ the Journey of two CFers

Update-IV Abx

So a final decision was made earlier today to move forward with IV antibiotics. I'm so mad and frustrated; but this is what needs to be done. I had a fever again today and was not feeling any better. My coordinator said we could continue to wait, but this infection might get worse (I don't think it's pneumonia--but are not going to get xrays, labs, etc., so we really don't know exactly what we are dealing with). I am going to do the iv abx outpatient, as my doctor is trying to keep everyone out of the hospital if possible due to several cases of the swine flu on our heart/lung transplant unit (HTICU). So as long as I start feeling better, I should be able to do the abx at home. We agreed that I would stay home from work tomorrow (Friday). If I'm feeling better, then they are ok with me going back to work on Tuesday (we are off Monday because of Labor Day). The Home health company is supposed to come today to set everything up (hopefully---i haven't heard from them yet). I am going to continue doing the inhaled TOBI and the oral Cipro in addition to the iv abx.

I had planned on going to the lake Friday-Monday! I'm not sure what my plans will be now. I can't really get my port wet, but I may be able to lay out on the pier some? I'm just not sure yet. I know I need to rest and I also have LOTS and LOTS and LOTS of studying that needs to get done!

Please pray for these abx to kick in quick, so I can start feeling better. I have my San Francisco babysitting trip the 1st week of October, so this should have me feeling great for the trip!

If you are interested in sending my friend Emily a card, letter, or anything else, click here to read this post. After reading the post you decide to do so, please contact me for the address and more information. The person updating her blog has requested for the info to be passed along if possible, instead of her having to send each individual the information. My email address can be found on this blog, so just send me an email or you can message me through facebook as well! Thank you for your continued prayers for Emily. She is doing so much better...God has truly been working!!!

CFF Statement on Health Care Reform

The CF Foundation has just released a statement on the Health Care Reform Bill! I highly recommend reading it!
CFF Statement on Health Care Reform - CF Foundation

Because the health care debate is still evolving, the Foundation has not yet taken a position on any particular health care reform bill. However, the plans being discussed contain many of the provisions the Foundation supports. I, personally, support the fact that CF patients should have access to the care they need! And I know for some, getting coverage or access to that care can be challenging. Medical costs for people with cystic fibrosis are 9 to 13 times higher than for the average health care consumer

What I don't support is "giving" care to those CFers (or really any people, for that matter) who are able to work and able to get insurance coverage through their job or some other resource. It frustrates me when those CFers become lazy and don't work because they don't want to and know they can get Medicare or Medicaid coverage... that is not acceptable in my opinion. If you are healthy enough to work, get off your behind, and work! There are many of us who struggle working, when in reality, we really shouldn't be because of our health.

There are also many other resources out there that can help you pay for healthcare coverage, and quite frankly, a lot of people don't take advantage of those resources.

I keep hearing over and over that a socialized healthcare system will be beneficial to CFers as well as other people with chronic health conditions. But I can't help wonder if that really is the case. Will I be able to get the care I need? Will I be able to get the care needed immediately? When I get pneumonia, I can't just wait another week for treatment, I have to get treated right then, or else it could become fatal. And that's the case for many other situations. I'll be honest, this new idea of public healthcare scares me somewhat.

I like what Brandi said, regarding this article: If the government is going to offer healthcare to the masses, how do we pay for it? Taxes? Taxes suck, but I can deal with it. Managed care? Managed care sucks more, but again, I'd survive. LESS care? NO WAY, NO HOW.

Like many others, I've been blessed with great healthcare coverage. And I don't want to lose it. Yes, I am still on my parent's insurance, but as soon as I graduate (for the 2nd time), i plan on getting a job in which I'm able to obtain good, quality, healthcare coverage. I WILL WORK HARD for my coverage!

Quick Update

A Quick update from the previous post: the original plan was to wait another day and call my coordinator back tomorrow (Thursday); but then she called me back and my doctor wanted me to go ahead and start on IV abx. My coordinator was about to fax the form into the home health company as we spoke. I convinced her to let me wait until the morning and see how I do tonight. I don't think there is anyway around this, and will probably be doing IV abx no matter what...UGH! I'm so frustrated...it's like this pattern of getting sick doesn't want to go away. I just started work...didn't expect to be out this soon! They said I can do outpatient IV abx, which would allow me to go to class. I have a feeling that i will still try and go to work too (that's just my nature) if I am doing the abx at home. So I'm not sure what will happen. Luckily, I don't have classes next Monday (due to labor day) and only my lecture class on Wed (not lab class because of holiday); so we might decide to admit me for 1 week, and then finish up at home. That way I will MAKE myself rest and then can resume work upon coming home. Since I'm already on inhaled TOBI, we will probably just be doing 1 iv antibiotic!

I did go to my lab class tonight...very long, but made it through the 3 hours! Since we don't meet next week, and the following week is our first exam, i felt like I really couldn't afford to miss the class tonight.

I'm off to bed.....thanks to all of who commented on the previous post and are praying for me...I appreciate it! I have been sick this year more than I have ever been since transplant....and it's extremely frustrating. Sometimes I don't understand why I keep getting sick post-transplant and why I don't have much luck with oral abx?? It's a mystery that continues to perplex me and the entire transplant team of doctors/coordinators!

sick??

Unfortunately, I have not been feeling much better, and the TOBI and Cipro just don't seem to be doing their job! My fever had been staying away, but spiked again this morning. I've been keeping in touch with my coordinator, and if things don't get better in the next day, back to Club Med it is! UGH!!!! I'm trying to wait this thing out...hoping it will get better. I really can't afford to miss classes right now. But I also want to feel better....quite a dilemma. I called in sick from work today and have been sleeping pretty much the entire day, with the exception of maybe an hour or so.

I skipped my lecture class tonight, but are going to try and attempt my lab class, which starts at 7:00. It's one of the classes, that if you miss, you really get behind. So we'll see how it goes and if i can make it through the 3 hr class.

Also...a few of you have asked about my friend Emily. She is doing much better. She does have a trach, but her vent settings have been lowered each day. She is initiating the majority of her breaths on her own. She has been alert and communicating with her family by writing, and even wanted to try typing on the computer today. God has definitely been good, and i think finally, she is going in the right direction. Please continue to pray for her, and for a quick and complete recovery! She has had a really long and tough road!

More Cruise Pics-Dinner Time

I just now realized that I hadn't finished posting pictures from my cruise! I posted all of them on facebook...but forgot about the blog! SORRY! Here are some pictures from dinner/night time!

Our dining room (Tuesday night)

Our head waiter and assistant waiter! They really put on a show each night! As our cruise director told us, they are NOT just "waiters", they are entertainers as well! Each assistant waiter is training to be a head waiter!

with our assistant waiter
(i know..my face looks funny...not sure what happened)

Our Matre 'd of our dining room!

Our dinner table group!

Monday Night! (i think my eyes look a little sleepy)

Formal night-Sunday!

Captain's Dinner (formal night)---cocktail party right before dinner. And whatever drink I had (i think it might have been a hurricane...not sure....but it was really good (and not very alcoholic)