Update on Shaun

Many of you have been praying for my friend Shaun, who is critically ill right now. He's a CF/transplant patient, who has, for reasons unknown to us, taken a turn for the worse this last month. He's had setback after setback after setback, but each time stabilizing somewhat. As of Sunday, he had stabilized from his most recent set-back, and started to improve a little. Today is a different story.

I called his Mom earlier to find out that he was not doing well. His prognosis was not good, and there was nothing else the doctors could do for him. His left lung has now collapsed, and consequently, has 4 chest tubes. His O2 sats are 73/74. He is on full pressure vent settings, as much as possible. His poor little body is as swollen as can be! It's now basically a waiting game, to see if God's ready to take him home or perform a miracle and let him continue his life here on Earth.

As I talked to his Mom earlier today, I became an emotional wreck, not knowing a lot of details, and hearing her crying on the other end. I panicked and called my Mom. I told her she needed to go down to the hospital to be there for Shaun's Mom and to see how he was doing. At the time I was doing my iv abx, and not dressed to go. I love my Mom...and she did just that for me. She stopped what she was doing (thankfully she was done with work), and rushed down to the hospital. She visited with them for about an hour, and is now on her way back home!

I will go up there tomorrow after my internship, as long as God doesn't decide to take him tonight. We know that from a medical standpoint, there is no recovering from where he is now, and that his prognosis is fatal, and is just a matter of days, if not hours. But God is in control, and I know personally he can change things around for the better real quick. It's still such a shock though to see this strong person, this fighter, who has never had one complication post-tx, now fighting for his life! He's loved all around, and will always hold a special place in my heart!

I ask you to pray for Shaun, his Mother, his two brothers (of which 1 has CF) and his Dad. I know Shaun is at peace right now and is not suffering or in any pain! I believe in times like these (and based on personal experience), God cradles you in his arms. Whether or not God takes him home tonight, or returns him back to us, we know it's for a reason and that God will NEVER leave Shaun.

Shaun..I love you man and are so honored to have met you and gotten to become close friends the last year and a half!!

Photo Pic

This is a random picture that was taken during one of my photopheresis treatments. I thought I would post it to give you a little idea of what it's like. You have to have a port to receive the treatment...they use a GIGANTIC NEEDLE (don't worry...they numb you before hand)....and you stay hooked up to a machine for about 4hours!! The lady in this picture with me is the doctor who is in charge of the photopheresis department and was taking my picture to use it in a presentation later on that day! So far I have completed about 2 years worth of photo treatments. They are currently on hold!

Answers-Part 1

Thanks to everyone who asked questions for my Q&A Post. I've decided to split up my answers into two different posts, so I won't have 1 extremely long post!

Aspiemom asked:
At what age did you realize you were a little different from your friends and not everyone had to do treatments, etc. like you?

Carrie also asked:
Did you always just kind of know you had CF or was there a specific time when your parents sat you down and told you?

I think I always knew I had CF. I "grew up" with it, so I knew no different. But as far as the details of CF, background, causes, etc., I'm sure that evolved overtime as I became more knowledgeable about what I had to do to stay healthy. Because my early childhood (elementary school) years was pretty normal and healthy, nothing Cf-related interfered with my life. I didn't start doing CPT until the age of 7, and breathing treatments at about the age of 10. I do remember vividly the 1st time I went in the hospital. I wasn't really sick, but my doctor wanted me to go in for a tune-up and for me to begin doing treatments. I think at that time (which was 7 years old) I began to realize what CF entailed, and what was necessary to stay healthy. When I entered the 5th grade, I started requiring oxygen at night while sleeping. This really hit hard, because it prevented me from going to slumber parties, etc. I also had gotten a feeding tube, which limited certain activities and spend-the-nite parties as well. My mom would let me skip my feeds every now and then. And depending on how I was feeling, I would go without o2 at night. I think the 5th grade was a turning point for me, where i started to realize that i was different, and that i was actually sick. I still though, however, do not remember a specific time or period of time where i realized i was different or where my parents sat me down and told me I "had CF." My parents treated me like a normal kid; i did normal things. I kept my CF pretty much a secret from the outside world (except family).
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Cindy asks:
What, if anything, would you change (future or past) about your CF treatment, the way you, or doctors have treated your CF? How do you keep the motivation to do your treatments on a regular basis, without any lapse? Do you ever get frustrated and have days where you just say, "The heck with it...I need a break!"?

This answer is going to basically be about the past and lengthy. Since I've had a lung transplant, I do not have to do any of the CF treatments. The only thing CF-related I do is take Enzymes. Backing up to the past, yes and no. There are days where I regret some decisions I made regarding my health care. I was not very good at doing CPT (chest therapy). At the time, the VEST had not been invented. We did it the old fashion way, by hand. Therefore, my parents were in charge of doing that. For some reason, my parents nor I were very devoted at doing CPT on a regular basis. It rarely got done twice a day (most days once-some days not at all). I don't think it really affected me, as far as getting sick more often, but when I look back, I wish my parents would have pushed more at doing CPT. I was a very compliant kid, and did what I was told. But my parents did let me have "days off" or times when i could skip a treatment. Later in high school, I dreaded having to get up extra early just to do 3 breathing treatments, and having several hours of treatment before I could go to bed. Yes, there were times, where I said to heck with it--not doing it tonight. But here is the catch: when you get sicker, or your CF progresses, you WANT to do your treatments, because they make you FEEL BETTER! That's part of your motivation.

I feel that my doctors treated my CF really well, and I don't think we would have changed a thing. In reality, I would never change a thing, because my decisions have brought me where I am today. But I'm not going to lie and say I never skipped treatments, etc.

One big thing that I regret, but don't really regret (if that makes sense?). This is more of a curiosity thing than anything. Right before I got sick during spring break of my senior year, I kind of pushed myself and held out from going to the doctor a LOT longer than I should have. I ALWAYS pushed myself to the very last leg, but ALWAYS rebounded quickly. My body adjusted, and learned how to function with low o2, with extra coughing spasms, etc. But back to spring break...we had a portable o2 sat monitor that i kept track of my 02 saturations. I had secretly been watching them (away from my parents)...and they were low...and kept getting lower. I kept trying to do extra treatments to get them back up. But they kept dropping down into the 70s. Finally I gradually (hint: gradually) told my Mom, which caused her and myself to worry. In my eyes, I didn't realize how serious it was. The day that I finally (along with my Mom) decided that I seriously couldn't breathe...my 02 sats were in the 50s on room air. At that time, we went to the ER at Children's, was admitted, and consequently, I required 02 24/7 from that day forward, and subsequently, caused me to be listed on the lung transplant list. NOW....every person tells me I was getting real sick and it would have ended up that way anyway (even if I had gone in the hospital sooner). So I always wonder what would have happened if I had got treated sooner, but don't regret it anyway. God chose that particular path for me for a reason.

You have to give yourself a day off every now and then (not consistently, but just to give yourself a break). If you're compliant (or parents who have younger kids that make their children do their treatments religiously), then I don't see any harm in taking a day off once in a while. (not like my above situation with my 02 sats dropping...but you get the picture). Even though I don't do CF treatments anymore, I still have to deal with post-transplant stuff. And my motivation for that is: God gave me a 2nd chance at life; I have 2 lobes in my body from living people; I have an opportunity now to do what I want to do in life; I can breathe. I was given a gift, and I would never screw that up on purpose. It's not as simple to take a day off post-tx!
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CFwife asks:
Was there anything that you did to help you feel better about your CF and taking care of your self?

You have to learn how to trust God, and let him help you through the difficult times. I prayed ALL the time. My parents were VERY supportive. I guess when I did things (such as being compliant with meds, treatments, etc.) that kept me out of the hospital, it made me feel good, and like I had somewhat control over my CF. I would cry sometimes to let out frustrations. And I just tried to not let CF control me. I've always been a strong and motivated person. So I think when you accomplish something (no matter what it is), you feel better about yourself. One thing that I think helped us older CF generations, is that we had other CF friends that we could talk to and hang out with. As I've mentioned before, here where I live, during most of my hospitalizations, we did not have any contact precautions around other CF patients. We watched movies in each other's rooms, laid in each other's beds, ate together, etc. We had a support system while we were in the hospital, and it was made up of those who knew exactly what you were going through. We made the best of our time in the hospital...it was a second home! The younger and newer generations of CF patients, unfortunately, don't know what that's like and will never experience that. But that was big part of getting us through difficult hospital stays. And I developed some strong friendships that continued outside of the hospital. CF can be scary, especially not knowing your personal outcome of this disease. But I don't think I ever once doubted that I could accomplish my goals in life. You have to believe in yourself and believe that God will help you get there, that He is along for the ride too!

Thanks ladies for these GREAT questions!

Party Pics

Here are some pictures from my 5 year transplant party yesterday!

Me and my brother!

This is Jeff, my other donor. I have his left lower-lobe! He and my Dad are long-term friends ever since high school.

Friends from high school/church! The girl on the left (Katy) was in town for a wedding. She lives in Texas, so it was great that she could drop by! She also came to see me Thursday night at the hospital!

This is Jeff's (my other donor) family. They have 4 kids (ages 11-17)!! I love them so much! He gave me the ultimate sacrifice!

(L-R: grandmother, me, Uncle, Aunt)

(L-R: Uncle, me, grandmother, brother)

Lady who my Mom works with. Her husband fishes with my Dad.

One of my best friends: Blakley!!

Celebrating!!

Today I had my 5 yr transplant anniversary party!! As you know, my actual anniversary was back in February, but we were just now able to get around to having a party!! It was lots of fun, and I feel so blessed to be able to share it with loving friends and family! God is so good!! We probably had over 50 people come! I'm tired now, but so glad I was able to have it! I will post pictures later!!

My iv abx schedule has been hectic, but my Mom has been helping me with the late night and early morning ones! Just two more days!! My plan is to return to my internship Tuesday or Wednesday, depending on how I'm feeling. Right now I feel about the same as the last few days, desperately wanting some deep sleep!!

I hope everyone has had an awesome weekend!!!

HOME AGAIN...YAY!

I am home...yay!! Finally I can get some real rest! I'm in the middle of doing my iv abx right now, and will continue doing those until Wednesday. I didn't realize how much time and energy doing 3 iv abx takes. But oh well...if it helps, then I'll be more than happy to do it. I'm still not feeling the best...very sob with activity (which includes just walking). My xray is not clear yet, but has improved.

Thanks for your comments and prayers for Shaun. He is stable, and has improved a tiny tiny tiny bit. He is still in critical condition. However, we all know God is in control, and Shaun is a fighter. I know he will pull out of this!!! Please continue to pray for him and his family, especially his Mom.

Update/Please Pray

Here is a quick update on me: Nothing has really changed. My right lung is moving air better, and I'm assuming my xray is better as well. This morning I woke up extremely nauseated and throwing up again, which was no fun. The plan is to still send me home tomorrow, as long as I don't start throwing up again. I will continue doing the 3 iv abx until Tuesday.

I had a lot of visitors today, which was nice. Several people from my Sunday School class came up, as well as one of my best friends from Texas. I will update tomorrow when I get home.

PLEASE continue to pray for my friend Shaun. He (according to his Mom) actually had another set back yesterday and is not doing well. The trach was a success, but he is in severe respiratory failure. One of our doctors did a bronch today and said that his lung was filled with necrotic (dead/damaged) tissue. He also has a right upper and right lower pneumothorax in the right lung. Yesterday, the doctor told his Mom that there was nothing else they could do for him. Right now it is a touch and go process, and we are all praying for a miracle. From a medical standpoint, it doesn't look good. But we know God is in complete control, and if it's not Shaun's time to leave this Earth, then God will put his holy hand on Shaun's body and heel him. This is a very difficult situation, and a miracles is our only hope right now. Please pray for a miracle, but also pray that Shaun and his Mom will submit to our Lord, and know that he is the ultimate Physician right now. When I talked to her tonight, she asked me to pray for him. She has NEVER asked that, nor used the word PRAYER in the last 1.5 yrs I've known them. So that is definitely God working in her. Before I leave tomorrow, I will go down to see Shaun and his Mom.

I promise to update again tomorrow. Thank you for your continued prayers for me and Shaun.

Also, I have not yet made a final decision on when I will return to my internship. I had planned on going back Monday, but my transplant coordinator wants me to wait until at least Thursday. This is a very hard decision. I know my health comes first, but Graduation is so important for me.

The Verdict

So my nurse practitioner walks in this morning and informs me that they are going to keep me here throughout the duration of my abx, possibly even 10 more days. I was shocked and explained to her of how I have always done home iv's in the past. We discussed it a little further, then decided to just wait and ask my doctor when he makes rounds later in the day. So when he came in, he finally agreed to let me go home on Friday on home iv's. I'll probably continue the iv abx through next Wednesday, for a total of 14 days. He wants my xray to improve some before I go home, hence Friday instead of sooner. He also said that home health doesn't do 3 iv abx. But if I'm comfortable doing them myself, then he agreed that would be ok. So as long as i keep going in the positive direction from here on out and my xray improves, I will go home on Friday. I'm feeling fine at rest. I just need to build my strength (and breathing) back up with activity.

Please pray for my friend Shaun tonight. They are putting a trach in him tomorrow. I know this will help him and probably make his recovery faster then staying on the vent. But this is going to be a major shock to him when he wakes up. When you have a trach, you can be very alert. He will not have to have sedation or any paralytics, which will be good. But I can't imagine what will go through his mind, when he wakes up and realizes what all has happened. He's a fighter. Please pray for his Mom to, as she has had to go through a lot of this on her own.

BORED!!!

I'm SO SO SO SO SO SO BORED!!!! I'm ready to get out of this place!! I know you CFers know how it feels to be bored. It's a LOT different post-tx! So I talked with my doctor that came in earlier. Evidently my pneumonia was worse off than I thought. I thought it was just a small spot in my right lower-lobe/lung. I asked my Dad if he got a good look at my xray when we were in clinic, because I didn't pay any attention to it. He said it covered my entire right lung (lobe in my case) and that it was like a "snow-storm." Now..that's coming from my Dad. I asked my doctor a little while ago if the pneumonia was still there. And he said yes, that it was going to take a good long while for it to clear up....UGH!!! So I may be here longer than I thought or realized. I really want to be out by Friday, so I can go back to my internship next week, but I really have no clue/idea...ugh!!!

I did manage to escape my room again today to eat lunch with some nurses from our transplant unit. They are still full, and it doesn't look good for me moving. Well, I think i may try and take a small nap before I get hooked up to my iv abx.

Oh...thank you for your prayers for Shaun. He is about the same today, not any worse.
I hope everyone had a good Monday!

Sunday night Hopsital update

Well...I'm still here...haven't moved rooms yet. It's been a pretty boring day. I did manage to escape my room for a little while during lunch to go eat with a couple of nurses at McAlister's. I'm feeling about the same. The walk to McAlister's wore me completely out and sent me on a bad wheezing rampage. But other than that, things have been pretty much the same. I'm still waiting to get some much needed sleep! I still have no indication on when I'm going home. As of Friday, I stil had some pneumonia showing on my xray. Hopefully tomorrow I will have a better idea. Dr.Y mentioned today about me going on continuous inhaled antibiotics to keep me from getting sick. Hmm...not sure about that?? We'll see! A different doctor comes back on for next week (hoping it's my favorite).

Please say a special prayer for my friend Shaun. Yesterday was an extremely critical day for him and he has now started completely over on his recovery. He coded several times last night, and was re-intubated/extubated multiple times due to mucous plugs blocking his airway. Everything has turned around (for the worse) again such as his temperature, CO2 levels, WBC count, etc. He also got a pneumothorax last night due to the intubation/removal of mucous plugs. He is back on 90% on the ventilator and is now under complete sedation and paralytics. The slightest move causes his sats to drop. He is in serious respiratory distress/failure and really needs a miracle right now. They are not sure if he has any neurological damage due to oxygen not getting to his lungs/brain yesterday. I know he is a fighter, and will beat this. God is right there beside him, but needs our help too! For those of you that have never been on complete sedation AND paralytics, it's basically like your body is in a coma. Your entire body is artificially paralyzed. This makes the recovery SO SO much harder. This is what I had right before/during my transplant, that caused me to have to learn how to walk again (which took 6+ months). He's a lot stronger than me and has a lot of strong muscles, etc.; so I'm hoping that won't be the case. But nothing is certain for us at this time. They are also looking at putting a trach tube in him in the next few days. So please say a special prayer for him tonight! Thank you!

After seeing my friend Shaun so sick, I feel bad/guilty asking prayers for me or complaining that I still feel sick. I know that is not what God wants me to think, but it's hard! But please still keep me in your prayers as well! I hope everyone has had a great weekend. I'm going to try and get a few hours of sleep before my midnight IV antibiotics!

Saturday Morning Hospital Update

Sorry I haven't posted again since Wednesday! I'm still in the hospital, and are feeling better. My fevers are gone, and I got my appetite back last night. My xray is also looking better, but don't know if the pneumonia is gone or not. I'm still not feeling great, but are on my way. They are continuing to treat me with 3 IV antibiotics in addition to the albuterol/atrovent aerosols. My wheezing is still acting up as well as my coughing, but that's pretty understandable.

I still have not been transferred to our transplant unit yet, but are going to do everything I can to try to get transferred today. Pray that I can get transferred, because it's not the same being off unit, and especially when you don't feel good. Dr.Y came on yesterday for the weekend, so I'm not sure how he will react to the request??

I'm trying to do a little bit of school work and plan to do some more this weekend. My guess is that I will be here until Wednesday and then go home on home IV's. But no-one has said anything yet, so who knows? I'm guessing we will do a pretty aggressive treatment plan this time to make sure the pneumonia clears up completely. I'll update again soon or if I end up moving rooms (keeping my fingers crossed).

Thanks for your continued prayers and sweet comments. Please continue to keep my friend Shaun in your prayers too, as he is still ventilated. He's improving, but it's been a VERY slow process!

I hope everyone has a great weekend.

Carrie's 100th Blog Post Giveaway!

Carrie @ Capturing Glimpses is giving away a goody bag in honor of her 100th post! Visit her blog to see how you can enter! The goody bag is filled with stuff to pamper a woman :) I would so LOVE LOVE to get this!!

A Thousand Tomorrows

A friend of mine told me about this book: "A Thousand Tomorrows" by Karen Kingsbury, which tells the story of a young couple whose love must face the ultimate challenge. The young woman in the story has CF, and eventually needs a lung transplant. I just finished reading it...and it's AWESOME! It is written by Karen Kingsbury, who is a well-known, and very good Christian author. I love her books, and I'm sure a lot of you have read some of her books as well. I highly recommend this book! It's not as long as most of her books, but long enough. You won't be able to put it down once you start. There is also a sequel to it ("Just Beyond the Clouds"), but I haven't read it yet. I think this book gives a good reality of what CF patients go through every day, but more importantly, explains how CF patients want to just live there life, no matter what it takes. There is always strong determination and a will to fight among us. This book does not go into major detail about CF, but touches on the basics. The book is also about Love, and that is really the basis for the story.


Now...not everything in this book is accurate regarding CF and transplant, and Karen Kingsbury acknowledges that at the end. But she's not making the stuff up either. She did her research. You just need to realize that every CF patient and transplant experience is unique (for you Mom's with recently diagnosed kids or young CF kids)

You can read an excerpt of the book by clicking here

Quickie

My fever is gone for the moment, so I thought I would write a quick update. So...as I mentioned in the previous post, I do have pneumonia and have been admitted to the hospital. Several of you have asked a few questions.

Our transplant unit is FULL again, so I AM on another unit. However, I'm not on the unit I was last time. It is a cardiac-step down unit. The nurses have been nice so far. It's still not the same, but hopefully I will move rooms soon. I'm ok with the doctor that is on call. It's not Dr.Y. It's actually the doctor that discharged me last time.

Right now they have me on 3 iv abx and albuterol treatments. I'm also in the process of getting some IV mag, because it was really low. The pneumonia is in the same lung and same spot as it always is...which is odd. I have not ever had pneumonia (post-tx) in the lobe from my Mom. It's always in my other donor's lung :)

I still have major chest and back pain. My breathing has calmed a little bit, and are hoping i can get some rest tonight. I do feel really sick, but know I will bounce back quick.

The most frustrating part of this is missing school. I know we'll figure a way to work it all out.

I know I will be here at least a week. Hopefully then I can go home and finish up the IV abx. who knows?? Thanks for your comments and prayers! I'll update again soon!

Back at Club Med

So I spoke to soon. I woke up this morning with high fevers, major chest pain, sob, coughing, etc. I called my tx coordinator and she told me to come to clinic. And sure enough I have pneumonia. My xray showed right lower-lung pneumonia, and my WBC count was up as well. I felt SO SO bad this morning. I felt like an 800 lb man was sitting on my chest. So they admitted me to the hospital. I'm guessing I will be here awhile.

I'll update more later....don't feel very good right now.

Update/Speaking/Papercuts

Sorry it's been a little while since I posted an update on me! It's been nonstop and I haven't had much "free" time to do anything. I apologize for no "Music-Monday" post. (I'll do double next week)

Thank you all who posted questions for my Q & A post. Tomorrow night is the deadline, so you still have a little time to ask if you haven't already. I will try and get all of them answered and posted by this weekend.

So as you know I started my internship back last Tuesday, just one-day post-hospital discharge. I went 3.5 days last week, and have been two days so far this week, and will go Wednesday and Thursday as well. Last weekend I attended a wedding on Saturday, and ended up being out in the rain for at least 30 minutes, due to the wedding arrangements. Sunday I ran a few errands, and did school work. To tell you the truth, my body is flat out exhausted. My coughing and wheezing have increased since being discharged from the hospital. I'm in a lot of back pain, and I've recently had some side/chest pain. I'm so freaking short of breath, that I barely make it walking the several blocks and stairs to and from the hospital where I'm interning at. I pray each morning for the Lord to just get me through the day. I feel like my body is not going to last....that I'm just getting sick again. I have things each night this week, and every weekend from here on out until the 1st weekend of June. I HAVE to graduate on May 9th. I can't give up...and I won't. I NEVER NEVER give up...never have and never will. But I'm just not sure what my body is going to do. I'm scared, but thankful for getting through each day. And I know God is in control and will get me through this. It's just so hard when you are sick, in pain, and just want to make it through the day so you can get home and take a 30 minute nap before dinner, and then shortly go to bed after dinner. And then...I don't sleep. I get an average of 3-4 hours per night. I don't know how I do it??? I don't like to complain...I don't complain/tell all my symptoms to my parents. I like to take care of things myself, and I don't want to sound like I'm complaining to other people. That's why I feel comfortable posting this on my blog!I'm waiting for my body to snap...but praying it will wait!!!

Ok...so enough of that!! Just please pray (and I know there are other people that need your prayers more than mine...but if you remember I would appreciate it) that my body will get through the next 2.5 weeks of my internship and the other events going on; that I WILL graduate on May 9th and not have anymore things interfering with me getting there! I'm a strong/hard-headed person. I'll finish no matter what...even if I am sick, because no-one knows how important graduating is to me!

A couple of side notes:

I did visit my friend Shaun today. He is doing better and the doctors are hoping to be able to extubate him tomorrow. He's still critical, and still needs your prayers. He looked much better today as well! I so wanted to talk to him, hold his hand and tell him how much of a fighter he is, tell him I love him, and that everything will be ok. But they put contact precautions on him right now, so I couldn't' touch anything (which is good in a way). But it hurts when someone so close to you is fighting for their life.

I got an email from my program director today saying I had been nominated as our UAB HIM program's most outstanding student. There are 2 Bachelor programs and 2 associate programs in the state of Alabama. So there are 4 people chosen (1 from each program/school) as outstanding students. They are then presented at the Alabama American Health Information Management Association State Meeting in April. I feel so honored. Through this program, and especially my senior year, I've been nominated for several awards and initiated into several honor societies. Never in my wildest dreams did I think this would happen. It shows me that my professors don't look down on my health (although some don't know that much). I feel so honored to get this award. I'm so honored to represent our program in SGA; I'm so honored to be a part of 2 honor societies and be nominated for multiple awards, etc. It really proves also that my professors are such great people and have such a big heart! (I do keep good grades....I know that helps, but I'm sure there are others that do that as well). So I'm truly blessed to receive this award!! Praise God!

So thirdly, I got an email from a lady that attended the CF Great Strides kick-off party for Tuscaloosa, AL that I attended and spoke at on March 5th. She emailed me to see if I would come and share my CF experiences and my testimony at her church on April 4th. They are having a Women's Luncheon and Fashion show. The church is letting her use some of it to raise awareness for CF. And I feel so honored to be able to share my story with others. The neat part about this is that these women will be mostly Godly women, and I can share how CF has brought me closer to GOD and how he has performed so many miracles! I can't wait!! I should just take a job speaking since I do it so much. But there would need to be some income involved though :)

Final side note....I'm wondering how many more paper cuts I can get on my hands??? You would think that as much as I've been through, I could handle a few paper cuts...but MAN--DO THEY HURT!!!(especially when you are washing your face and showering) I'm sure filing paperwork and putting paperwork in order for 6 hours today didn't help!!

Ok...WOW!!!! That was a long post! Sorry! This week starts the beginning of one of the busiest times of the year for me (March-June). I love being busy, but love feeling good during everything as well. I'll update soon with some of the events coming up for me!

Reminder!!!!!!!!!!!!!!!!

Just a reminder to ask questions for my Q & A post. The window for asking is scheduled to close this Wednesday night. So ask away!!!

Grilling Goodness #22

Welcome back for another installment of Grilling Goodness! I hope that you've had a wonderful week! To participate in this Friday Meme, click here

1. Did you learn anything new this week? Hmmm....not sure. As far as new information type of stuff....no. I've learned or really realized, that my body just doesn't have as much energy that I think it does, and completing my internship is proving to be harder than I expected!

2. Will you wear green on St. Patty's Day or do you not give a hoot?? I am going to try and wear green. It will be an internship day for me...so if I have something that is nice and green to wear...then I'll do it! I have a feeling that the department where I'm doing my internship will dress up in green!

3. Do you wash clothes throughout the week or only on a specific day? Well, since I still live at home...I'm blessed to have my Mom wash my clothes. However, when I have free time, I do help out a good bit with laundry! So, I'm going to say that my Mom pretty much does laundry every day of the week.

4. What is one of the most popular 'spams' you get in your junk email inbox? Probably about the lottery....or emails saying you have won money.

5. Are you where you want to be? (you decide the meaning of the question for your answer). WOW!! That is a tough question!!! I would have to say "yes" and "no." It would be "no" for several reasons: One being that I want to grow in my relationship with Christ a WHOLE LOT more. I am not where I want to be yet in that relationship. It's improving, but will take time. Also, as far as my future goes, I plan on getting married, having children, and having a career in nursing. Those things have not happened yet, so I am not where I want to be as far as my future. However, I also have to answer "yes" to this question. I've been so blessed throughout my life. God has given me a second chance at life, and I'm doing my best to live my life to the fullest. God has plans for me, and if he thinks I'm good where I am, then that's fine. He is in control. Because he has blessed me with so many miracles, that's plenty for me. I'm just blessed to be alive....so I really can't complain on "where I am today."

6. Do you know how to swim? Yes, but I'm not the best at it. Prior to transplant, I didn't have the energy or strength to swim much. I basically just floated around. After transplant...about 2 years post...I began to swim again after I gained the majority of my strength back. I am still weak in my legs and overall strength, which prevents me from being a good swimmer. But if I had to save someone....then I could do it!

7. Do you take trips with your girlfriends? Not far away trips. We've been to the beach before when I was in high school. I'll be going on a cruise with one of them this summer.

8. What was your favorite purchase this week? (big or small) I haven't really purchased much this week besides food and gas. So I'm going to have to go with 2 cards I bought for Shaun today (one for his b'day and one Get Well card). He is so special to me, and has had a rough set back recently, so that meant a lot to me.

Quick update on Shaun: He has improved a good bit, but is still on the ventilator. They have decreased the amount of sedation and are trying to get him to practice taking in breaths on his own. He will probably remain on the vent til the beginning of next week. I went and saw him today. He was semi-alert, where he could here us, and lift his hand up a little bit. I know he knew I was in the room. I talked to him, and held/rubbed his hand. It breaks my heart to see him like that. He was such a strong person (and still is) and has not had any complications since his transplant. I know he is a fighter, and will bounce back in no-time. But as you know, when you are still on a ventilator, it's still a critical time! So please continue to lift Shaun up in your prayers. Thanks!

JUST A REMINDER: Don't forget to ask questions for my Q & A post! The deadline is next Wednesday!! I've only had 1 person submit questions....SO ask away!

Rejoicing

I've been meaning to do this post for a LONG while, but never got around to it. This is picking up from previous posts about Hope, which is the theme at my church right now! This comes from 1 Peter, Chapter 1. Here is a little mini sermon, per se, on how we can rejoice in times of trials. I think this is perfect for us CFers, or parents of a CF kids. Although it can be applied to ANY situation involving trials!!

So....during our times of trials, we can rejoice in knowing that:

1). The Lord is in Control. "In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials," 1 Peter 1:6
We are chosen by God, and God is working in us during times of trials. We may even have more trials or problems because we are believers. We will suffer according to God's will. But we can rejoice in knowing that HE is in control, and the suffering will only be for a little while.

2). The Lord is refining our faith! "..so that the tested genuineness of your faith--more precious than gold that perishes though it is tested by fire--may be found to result in praise and glory and honor at the revelation of Jesus Christ." 1 Peter 1:7
NOTHING happens by accident. There is no fate or Karma, if you are a believer in Jesus Christ. During times of trials, the Lord wants us to show that our faith is authentic. HE is burning off all of the impurities. So next time you are facing a trial, sickness, death, etc....just remember that the Lord is testing the authenticity of your faith!

3). The Lord is becoming more & more precious to us!! "Though you have not seen him, you love and trust him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory," 1 Peter 1:8
During these trying times...we realize how precious our Lord and Savior really is to us!

4). The Lord is close (intimate) with us right now (during the times of trials).
"...obtaining the outcome of your faith, the salvation of your souls," 1 Peter 1:9
The word "obtaining" refers to receiving on a continuing basis. We continue to draw closer to God on a daily basis. It is during these times of trials that God is the most intimate with us.

I think this is very comforting, relieving, and rejoicing to know that our times of trials happen for a reason, and that God uses these times to refine our faith, and become closer to each and every one of us! I know that my transplant-and VERY near death experience, was part of God's plan! The whole transplant journey, the 6 months it took for me to walk again, etc.,...God was testing my faith!! I grew SO much closer to him during that time...and even more afterward, after seeing how he used my trials to his glory!!

I hope this brings you some comforting news and something to remember next time you are facing a certain situation/trial in life!

Q&A

So I'm following in my fellow bloggers' footsteps! I'm going to do a Q&A session. So ask away....I'm very open and will answer pretty much anything....nothing is too personal for me!! I'll leave this open until next Wednesday-March 11th! Leave a comment or send me an email!!

On a side note....I'm going back to my internship today. I just found out yesterday that my instructor is out of town all week...which frustrates me. So i guess I'll be looking for work to do! I'm feeling better, but are still REALLY exhausted. My cough is still very productive, and I'm still sob with activity (I'm sure that will get better). Hopefully the oral abx will clear things out for me!!

Going Home...finally

YAY!! I'm finally being discharged!! It's definitely been a lot longer stay than I anticipated!!

My culture sensitivities finally came back today and it turns out that I'm sensitive to most anything (pan-sensitive)...which has never happened. The doctor was surprised. He still put me on oral Cipro for two more weeks. He said he wants me to complete a 3-week course of therapy to make sure whatever I have/had gets knocked out for good!

My magnesium level was low this morning, so I got some IV mag. It's taken about 5 hours to go in. As soon as it finishes, I can leave! I am feeling lots better compared to a week ago, but still don't feel 100%. It will take me awhile to get back in the swing of things!

I'm glad to be going home, and are ready to get in my own bed!!! I haven't decided if I will be going to my internship tomorrow or not. I NEED to, but don't want to jump immediately into it when I don't have any rest. So we'll see!! Thank you all for your continued prayers and support.

Please continue to keep my friend Shaun in your prayers!

Sat. morning update

So I just saw the doctor a little while ago. As I mentioned in my last post, a different doctor is on for the weekend (one I like better). But that bad part is that they all have different opinions. So this one doesn't want to send me home yet.....bummer. My culture sensitivities are not back yet and he doesn't want to send me home on some random abx. He said I was growing pseudomonas (I don't know if that is the same thing as gram-negative rods or not?). He said they might be back tomorrow...but no promises. Then he proceeds to say he might just send me home on home iv abx....ugh!! While I am ready to go home and get back to normal life, I do want what is best for me and agree with him. Usually I am only sensitive to 1 oral abx. So if I need iv abx to knock this stuff out for good, then i guess I'll have to do it. I wouldn't mind it any other time....just now is not the best time with my internship. Next week is spring break for UAB...so I won't have any additional assignments or tests due. But I do have several make-up assignments, 1 exam, and a lot of reading/studying to do. The most important part is that I'm missing my internship. And since I'm graduating in May....not much time to make-up stuff right now. So please pray that when I do get out of here, that I'll be able to make everything up and get everything done in time and good grades to graduate. This whole trip was totally unexpected, and my days here keep increasing.

My friend Shaun still needs your prayers, but should make a full recovery (although it may take several weeks). We almost lost him early Friday morning....he went into severe shock and his prognosis was not good). So please continue to lift him up!! Thanks!!

Well...at least I'm back down on our transplant floor and some of my favorite nurses work today :) My mom and brother should be coming down later on today.

Until next time.....

Friday Update/Moving

TGIF!!!

I need everyone to lift my friend Shaun up in prayer today! He is going downhill, and was intubated last night! I really don't' know anymore details, but will be going down to the unit to visit him and his mom later on today. He is just a little over 1 year post-transplant. So please, keep him in your prayers!! THANKS!

As for me....I've had a rough night and morning. I started getting nauseated early this morning, and started throwing up around 8:30. It took me 1 hour to finally get my nurse to call the doctor and get some medicine ordered. That took forever, and of course he didn't order what I know helps me. The doctor then came to see me, and I told him I was still nauseated and throwing up after receiving the Zofran. He ordered Phinigren, but it took almost another 30 minutes to get that. The nausea is now gone though...so yay!!!

The service on this unit has gotten worse and worse and I have to VENT about it...sorry!! No one ever put the overlay for my bed together yesterday, after asking about 4 or 5 times. The nurse saw it this morning and told my nurse that was orienting to put it together. Well, has he done that yet? NO!!!

I finished my IV abx about 6:00 this morning. My night shift nurse had set the pump to switch over to the saline/fluids. I guess because she was lazy and didn't want to come unhook me??? So when my day shift nurse came around at 7:00, I told her the med had been through and could she please unhook me from the fluids (I don't need extra fluids...and hate it when i get them). My day shift nurse said she would do it when she came back around with her "stuff." Do you know what time she finally unhooked me?? 10:30. UGh!! I was so frustrated! When my 4:00 am med finished last night, it took 4 calls to the nurses station and about 45 minutes for someone to come in and unhook me.

Anyways...enough of me ranting!! I'm MOVING to our transplant floor..YAY!! One of my BEST BEST nurses from that unit has worked to get me moved. So as soon as the patient leaves and the room is cleaned, I'm moving. So who knows when that will be, but at least I'm getting off this floor! And even if it is only til tomorrow!!

I still don't know a definite date for coming home. Another doctor comes on service for the weekend!

I'll update later! I hope everyone is having a great Friday!

Your Name

March 6-12th is the week to celebrate your name! Why did your parents select your name? What do you love or dislike about your name? Do you have a nickname? What does your name mean? Are there any interesting facts about your name?

My full name is Kathryn Marie Ballard

My middle name is named after my Mom's mother: Marian, my Dad's mother: Mary Louise, and my Mom's grandmother: Mary Ellen.

As far as my first name: Kathryn..my Mom said that my Dad picked out that name...that he fell in love with it! And my Dad loved the spelling. We have a lot of "K" names in our family, but they really didn't play a part in naming me. I have a baby cousin (will be 1 year in March), who was named after me, but they are spelling it Katherine and Katie.

Later on..my parents decide that they would call me Katey and spell it different than most Katie's.

I love my name...all of it. I love that the spelling is a little different and not as common.

The meaning of my name is: Pure. In the early Christian era it became associated with Greek καθαρος (katharos) "pure". In Irish, the name Kathryn means- pure, virginal.

Famous bearers of the name include Catherine of Siena, a 14th-century mystic, and Catherine de' Medici, a 16th-century French queen. It was also borne by three of Henry VIII's wives, including Katherine of Aragon, and by two empresses of Russia, including Catherine the Great.

I'm looking forward to hearing the meaning and history behind all of your names!!

Thursday Night Update

So I just saw the doctor...yes, at 7:45P.M. Doesn't look like I'll be getting out of here tomorrow :( But I gotta go on Saturday no matter what! I need at least one day at home before starting internship back!!

He said my sputum culture had just grown out the usual gram-negative rods, and he needs a little bit more information to determine what to put me on at home. He said all my labs looked good, except my WBC Count was low again...2.2. He said he thinks its the antibiotics, but I don't think abx can't make it low. But who knows?

So...that's the plan right now. I'm going to try and get moved over to the transplant unit, but not sure if it will happen or not?

Well....I'll update again tomorrow! I hope everyone is feeling better and has a great night!!

Thursday Morning Update

Sorry I didn't update yesterday!! Things are going ok. My fever seems to stay away. I haven't spiked another one since Tuesday. It was a little higher than usual yesterday afternoon (99.4). Yesterday I did feel a little better, and today feels about the same so far. I didn't have a very good night (coughing a lot, bed uncomfortable, people coming in, etc.), so I slept in this morning and may even take a little nap in a little while.

The doctor didn't round until 7:30pm last night. I seriously thought he wasn't coming by, but then showed up late. My mom was here with me when he came in. He didn't really say much. He asked me how I was basically. He said my CF sputum culture hadn't grown out anything yet, but it was showing stuff (which means there is stuff to grow out). So I'm guessing he wants to see what grows out to help him decide on what to send me home on. So my guess is that I will go home tomorrow (Friday). They also did routine lab work this morning, so I'm interested to see the results. I never asked about the results from Monday, but obviously they were ok (I hope).

My back is killing me from the bed. They can't fix the bed...which is very frustrating. I don't see how someone is comfortable in this type of bed. I had more flies in my room yesterday that I had to kill. The nurse said they would call Maintenance to come put "fly catchers" in my room. Somehow that doesn't sound to comforting. They can't spray in the room, because it's a pulmonary floor. Then I got in the shower last night, and my drain didn't work. So I had to rush before the shower overflowed above the little ledge. (It's a walk in shower, so it has a very very minimal ledge to keep the water in). So needless to say, it's not the best room or service over here.

I did have 2 visitors yesterday, which was nice! And I felt like visiting with one of my CF friends (Brandi) that's on the floor too!!

Thanks for reassuring me that the pink lines must be coming from my laptop!!!

Shaun, my CF/transplant friend who is inpatient right now that I mentioned in an earlier post, is still about the same. Not worse, but not better. Please continue to keep him in your prayers!

Thanks for your continued prayers and comments!! I'll update again when I know something!!

SNOW pics!!!

So on Sunday, where I live, got a good bit of snow. Now, Alabama rarely gets snow...or at least snow that sticks. We can go years and years without snow! So when it does snow...you take advantage of it and go crazy!! The weather forecasters said that this was the most it's snowed in probably 10 years!! CRAZY!! Unfortunately since I was sick, I couldn't get out and play in it. But I made my Mom take pictures...LOTS AND LOTS. She took some video too! If I can figure out how to upload a video, I might try and post it later on! And the little boys next door to us, decided to use our snow to build a snow-man. I was a little upset, because it was so beaituful, and I wanted our snow to stay in our front yard. But oh well. They were having fun, so I let it go. But I still think it was a little rude! It continued to snow through most of the day. It stayed well-below freezing, which enabled the snow to stick a little longer. We even had a few patches still on the ground when we woke up Monday morning!! Usually when we get snow, it's melted by lunch time.

Anyway...I thought I would share some pictures with you! We had at least 3 inches!!!

Our backyard!!

This was a snowman across the street from us!!!

Our deck!

This is the snowman next door where the kids stole the snow from our front yard!

Our house...the snow on the ground is sparse due to the snowman :)

The snow was coming down really hard!