Make-Up Monday

I have to say that I hate going for a whole week or weeks at a time and not blogging. Totally not my thing!! But life has just been so crazy lately i really have not had time to blog! Sorry!! I Hope I don't lose any loyal followers!!!

So hence the title, I will try, with this post, make-up for not blogging this past week, with yet another week wrap-up/update, etc.

Basically my life and schedule right now has NO/ZERO free time! Work is crazy, school is even crazier! This upcoming anatomy test is driving me to the brink of insanity...stayed up ALL night the past two nights studying, hence no sleep. The test is Wednesday and I will be dancing on cloud nine once it is over (of course there will be a lab practical the next week, so not too much dancing)! And despite all the studying, I still don't feel like I'm prepared enough.

Last Friday my body decided to get sick...UGH! But after lots of prayers (maybe?), on Saturday I was fever-free and feeling better. I'm exhausted and still don't feel great, but trying to hold out until Wednesday after my GI Tests. It seems I can't "get anywhere" until these tests are completed!

I babysat Sunday afternoon (something i had committed to weeks ago and couldn't cancel) and ended up cooking Mac N cheese on a gas stove! (I don't cook EVER, had never cooked Mac N Cheese before, let alone used a gas stove). Needless to say, when the couple returned home, they smelled gas and called the Fire Department. Perfect ending to my night :) (kinda funny though too)

Last Friday I was supposed to speak and present at an Axcan Pharma event! Unfortunately, my body got pretty sick and I had to cancel. I was so excited and really bummed for missing it! I was presenting for about 30 minutes in a big crowd, which I hadn't really done that amount of time speaking before! Oh well, they said they would call me again next time!

Tomorrow: Tuesday: work; New Haircut
Wed: work; GI Tests, Dr's appt, Anatomy Lecture test, Anatomy lab class
Thursday: work; bible study
Friday: work; Auburn music concert for my cousin
This weekend: STUDY STUDY STUDY!!!!!!!!!!!!

I hope I can post this week! I will def post after my GI tests and appointments. But don't expect a lot this week! Sorry! Despite that, however, I am reading every one's blogs and trying to comment where needed! And I'm praying for all of you struggling right now, especially with your health! Love to you all!

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!

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!!!

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!

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!

Under-the-weather

I've been feeling a little under the weather lately, and feel like I'm getting worse and not better! UGH!!! No time to be sick! So I called my transplant coordinator and are going to clinic in the morning. I have a scheduled appointment next Wednesday and REALLY REALLY wanted to hold out until then, but my coordinator really wants me to come. I'm still debating...but I guess I will go! I'm just not looking forward to getting up at 5:30 AM!

I've lost about 6-7lbs, which is a little more weight than I can afford to lose...that puts me at about 90-91 pounds. I've also had a low-grade fever a couple of days, chest pain, sob, major fatigue, and major wheezing. I'm praying I can escape clinic with some oral abx!

I have a friend coming in from Texas and she is spending the night with me tomorrow and Thursday. We are going to the lake on Thursday, providing the weather is good! So I am excited about this and really hope I feel great!

I have class tomorrow night too...and this is the 1st night for our anatomy lab class...so i'm definitely curious, but not looking forward to more studying :) My lecture and lab class last from 5:30pm-9:50pm (long night)! I've got to get organized and start studying EACH night for this class, or come test night, I'm going to be in deep trouble!

ALSO...I start back work on Friday...yippee!!

I have some exciting news to share with you, in which I will post about later this week!

Also, for those of you following my updates with Emily, she was scheduled to get a trach put in today. She has kind of taken a backward turn, so we are praying she will turn around in the POSITIVE direction quickly!

Lake/Week Wrap-Up

I know I haven't posted much this week...sorry! I just haven't had much to post on =)

I did finally get some lake time in today! The water is finally working. For those of you that have read my previous posts or follow me on facebook, our water pressure has been acting up at our lake house. We've tried to go down for the last 3 weekends, and each time, we haven't had any water. It's not completely fixed, but is working enough! My Mom and I went down yesterday evening! Today was such a beautiful day. The sky was clear and so blue! Very little clouds! Very hot, but a small breeze! We really enjoyed the time together too, which included a nice hour-long boat ride! I hated that we had to come back tonight, but my Uncle is having his 70th b'day part tomorrow! I definitely want to be there...and plus, I need to be at church in the morning!

This past week has been pretty layed back. I did get to visit a CF friend of mine who is currently in the hospital on Thursday for a long while. She is getting evaluated for transplant, so I had a nice visit with her and her Mom! I also ate lunch with some of my nurse friends from HTICU on Thursday! The week included one night of babysitting, a few PT appointments for my back, and running some errands. I did cancel my dentist appointment from this past Monday due to no energy and too tired to get out of bed =) It's rescheduled for the 27th!

My back is still in major pain, but I think it is on its way to getting better....at least praying that it is! I really need it to be LOTS better....basically a healing miracles before my trips coming up! I've also been really exhausted, and very little energy! I'm probably going to start on Cipro antibiotic this coming week just as a precaution! We all know that when I get really busy and "overdo" myself, the outcome isn't all that great! So we'll see!

I hope everyone has had a great week!! I will have lots more to post on next week (or that's the plan)! I have to start getting ready/prepared for San Francisco!

Fireworks

I thought I would share a few pictures of the fireworks from Saturday night. The place where we were viewing them ended up having a few trees in the way...so it wasn't the best view. However, it was still great! And my pictures turned out pretty good.

Friday night my parents and I went to my cousins house for dinner and to play games! I had a great time at Brandi's party Saturday night and at the pool during the day! I hadn't been to a "party" in a long time...so it was good to go! I guess I wore myself out, because I slept the majority of the day yesterday!

I am babysitting all day tomorrow and Thursday! I haven't had much energy lately, so I'm not sure what's going on there. I don't know if it is related to my back pain or what? My wheezing is CRAZY too as well as being short of breath. Again, I'm not sure if the sob is related to my back pain or not? I might be calling my transplant coordinator this week to seek out her opinion and maybe go ahead and take the Cipro prescription my doctor gave me at clinic. I want to be feeling tip-top shape for my upcoming trips. I'm really out of shape....but can't do a whole lot of exercise due to back pain and pulled knee muscle.

We have a plumber coming to our lake house tomorrow...I'm praying that he can fix whatever the problem is, so we can get back to the lake this weekend!

Oh...and as soon as I have more info on the cat or when we get her, I will post that info!!

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!!

Still here....

Sorry I haven't posted any more this week. Although, as I have noticed, a good many of the blogs I follow haven't posted much over the last few weeks either.

Our Internet was down for 2 days (Thursday and Friday)...and I seriously thought I was going to go crazy. I have realized that I love my high speed-cable Internet dearly. Luckily, the Charter guy fixed it on Saturday. We do have an AOL dial-up account, so I was able to check email...but it's kind of a pain to use dial-up.

Anyway....I'm feeling a tad better. The fevers are gone, but I'm still feeling pretty crummy. I'm very tired, weak, and SOB. More than likely I will get a 2nd oral abx tomorrow to help knock this infection out for good. The problem is though, that over the last year or so, I am only sensitive to 1 oral abx...Cipro. That's why I usually end up in the hospital with pneumonia--because the oral abx won't work. But I have a good feeling that this infection won't turn into that. We'll see.

I have many appointments next week: Photo on Monday and Tuesday morning; a graduation advising appointment Thursday morning; and my rescheduled Hidascan test for sometime next week as well. I will post with updates from those later in the week!

I'm very tired and nauseated...AND it's raining outside. So I think I'm gonna nap...perfect conditions!

Happy 2009 to everyone and I wish you all the best! I hope your 1st weekend of the new year is going great! Don't forget to check out my Music Monday post tomorrow (already have it scheduled to post)! I also have a post I want to do on this morning's church sermon!!

Frustrating Day

Quickie:

It's been a LONG LONG and frustrating day. I'm not going to go into major details...but wanted to write a quick update in case time takes control of me.

Clinic went fine...pfts, lab work and xray were all good. However, I feel like crap...very crummy. Usually my labs do not show when there is an infection due to being so immunosuppressed...they never have. The doctor I saw seems to not really care and pretty much dismissed everything. Which kinda of ticked me off. That's fine with me, but when it comes back to bit him in the....it's gonna serve him right. I don't make up these symptoms...coughing up junk, fatigue, and shortness of breath. I'm very active and choose to be able to work and go to school. I don't like my health interfering. But when it continues to do so for several months and nothing is done about it, this is usually when it will take a turn for the worse.

Nevertheless, in addition to clinic, I had to get my flu shot and my port flushed. Technically, I'm not supposed to get a flu shot within 1-week of my photo treatments (which I have next week). The photo technicians are very adamant about it. However, this particular transplant doctor didn't seam to care and said he wanted it done anyway. It's not that I care one way or another about actually getting the flu shot, but I tend to try and follow the guidelines.

I skipped my ENT appointment as I didn't get through with everything until about 2:00. And my appointment was at 2:30 about 20 minutes away. I felt horrible and tired, and really wanted to go home. I came home took a brief nap, got up and took a final exam, and then I will leave for work in about 1 hour.

I'm tired and very frustrated and very fed up with some of the transplant team. It's almost pointless to go to clinic if the outcome is going to turn out like today. And to get there at 6:30 and not leave actual clinic until 11:00...that's ridiculous, and in my opinion is not really worth it.

One final interesting fact about today's appointment is this: My WBC count was up to 4 something. It's been in the "2"s and even lower. I have not had my photo treatments since September and one of the theories was that the photo was suppressing my white blood cell count on top of the medications, etc. I think it's interesting that the wbc count was up today and are beginning to think there may be a connection. Hint my idea of stopping photo might not be so bad after all. However, the 2 doctors that have those theories were not at clinic today, bummer.

Well, I've got a long day ahead of me tomorrow....and just really don't feel good and are very very frustrated. I guess all I can do is trust God and have faith that everything will work out for the better and just go on with my life. It's not that I don't trust HIM to take care of everything, I just get frustrated sometimes and feel like I'm this little hole in the wall...and sometimes are not really payed much attention to.

Oh yea...my friend Brandi is in the hospital right now for her routine CF tune up. She got admitted last Monday and will be in for a total of 3 weeks. Please keep her in your prayers!

Busy Week

Sorry I haven't posted in awhile. To tell you the truth, I haven't been on my computer much the last few days. It's been a busy, long, and crazy week. I managed to work my usually 4 days this week. Which is great, because over the last 2-3 weeks, I've only worked about 3-4 days overall. We are slammed at work and are very very busy. So on Thursday and Friday, I worked about 1 hour later than usual. Friday I was the 2nd to last person to leave (out of about 60 or so people). I like being busy, but was glad to go home at the end of the day.

I finally made it to clinicals on Wednesday. However, after arriving at 8:15 am, I sat around for 2 1/2 hours waiting for my clinical instructor to get out of a meeting. After missing clinical the entire month of October, I was a little angry with her. Therefore, I only had about 1 hour to actually do clinical work before leaving for the day. This coming week my plan is to attend clinicals all day Wednesday, Thursday, and Friday to catch up on the hours I've missed. I'm praying I can get everything done that needs to be done in order to complete and pass the course. I've got a lot of school work ahead of me for the next 3 weeks.

As far as my health goes....Tuesday I started having a small cough associated with some sinus issues. Wednesday I ended up staying up most of the evening/night coughing up major junk from my lungs for hours and hours and hours. My ribs, back, head, etc. hurt so bad....which made Thursday a little harder to endure at work. But nevertheless, I made it through. Thursday and Friday were much better. However, last night, the coughing and sinus stuff started up again. And today I don't feel very well. This is still all on top of the major fatigue I've been having. I'm a little worried...but trying to just put it to the side and keep on with work and school.

Wednesday after clinicals I had lunch with some of my favorite nurses from HTICU (our transplant floor) at UAB. Since my clinical is there, one of the nurses invited me to walk over and join them for lunch. All lot of my nurses are just a few years older than me, so we are able to be good friends and hang out every now and then, which is nice. It's nice to be able to have that kind of a relationship with people who also take the best care of you when you are sick. Because I'm a frequent inhabitant of HITCU and UAB, I've become friends with MANY MANY of the nurses--young and old! After leaving UAB, I came home to complete some school work...then went off to work (my babysitting job).

(I know I don't mention much about the above job.....I keep kids every other Wednesday night for a church that has what they call "community group" which is like a home-based Sunday School Class. I've been keeping these kids for about 3.5 years now and love them to death. I used to do it every Wednesday night, every Sunday morning and every Sunday night. However, they've cut back a little, and some of the kids have grown up, therefore they only need me on the Wednesday nights. I love this job..and wouldn't give it up for the world. It's nice to have another set of prayer warriors to when I need them.)

I slept in today and are just relaxing and taking it easy. I'm going to go hang out with a couple of friends tonight at someones house for a fun and relaxing evening. I'm hoping to make it to church tomorrow morning. And more importantly....I hope to accomplish a WHOLE LOT of school work.

I hope everyone has an awesome weekend. I will try my best at updating more frequently. I can guarantee you I will post tomorrow and Monday!!! (have them already planned).

Long Week

WOW...it's been a REALLY REALLY LONG and STRESSFUL week. Monday started out fine. Then Tuesday was a day spent in the bed because of not feeling well. Wednesday was filled with Dr. appointments and finding out that Angel passed away. On Thursday I volunteered and spoke at our local CFF golf tournament. That evening/night a couple of us went to Angel's visitation services about 2.5 hrs away. We didn't get in that night until about midnight. Friday morning I went into work for about 1 hour then picked up a friend to drive again to Angel's funeral. We didn't get home until about 6:00 that evening. I went to bed early last night and slept in this morning. I have been trying to catch up on some school work today.

I am still so physically exhausted and the events of this week have not helped. I am trying to eat more and have managed to gain about 1.5 pounds. I'm hoping to get in for a GI consult in the next week or two. And then I will decide about stopping my photo treatments probably by the next session (which is in 3 weeks).

I did really well Thursday night at Angel's visitation. I rode up with a friend (and former nurse that took care of Angel) and with another CF patient (Brandi). We met another CF patient/friend up there as well as another who was like a brother to Angel. We saw Angel and I was able to speak to her Mom some. We visited with JB (the close brother-like friend), his wife, and everyone else for awhile, then grabbed some dinner and took off on the 2 hr drive back home.

Yesterday the funeral was at 12 noon. Brandi and I arrived about 11:30. We visited with friends and Angel's mom once more before the funeral began. The funeral was short and sweet. But we were reassured that Angel is in Heaven with our Lord and Savior. That made the funeral easier to sit through. Although by no means was it easy. I knew that I would "breakdown" at some point, but didn't know when. Well, that time happened during the funeral yesterday and shortly after. We followed the procession to the grave side and saw "Angel" (her body) be buried and filled with dirt by her Pal Bearers (which was a little odd). We visited briefly again with friends and family before leaving to make the trip home. It was definitely a "hard and trying" day, but didn't go without its good and funny memories. I will never forget these last 2 days and will never forget this sweet Angel. She will always be remembered and in my heart forever. This is the 1st person I've "lost" to CF that has been really close, and I am realizing it is very hard to deal with. But I know Jesus will continue to lift me up and help me get through this hard time.

Please pray for me. Due to the events surrounding the last couple of weeks (really month), I have fallen behind in my school work and really need to catch up. The semester is over in just 4 short weeks. I have missed too much of clinical, and will have to miss more work in order to fulfill the required hours. It's been a long and stressful (both physically and mentally) week. But I know next week will be better and that God will definitely get me through it.

I want to end this post with this: If you are not a believer in Jesus Christ and do not know "where" you are going after your life here on Earth, then you need to do some serious thinking. I know I can't make that decision for you. You never know when it will be your time to leave this Earth. So you better think hard...and decide if you want to spend your eternal and everlasting life in paradise with our Lord, Jesus Christ, or in hell, suffering for eternity. The choice is yours!

ANGEL---I know you are rejoicing with Jesus right now!! Rest in Peace and I will see you in the future!! I love you!!

Clinic

The dreaded Clinic...I don't think I'm ever going to go back (j/k..I have to). But seriously....rough day. It took 5 sticks in the lab to get blood. Ugh! Then soon after I find out that one of my best CF friends past away last night. Then I get into clinic...wait a good while. I couldn't go get something to eat, in fear that I would miss the doctor. I woke up at 5:15, left the house at 6:15, signed in at 6:45..and lo and behold...I was #2 on the list! Evidently, luck was not with me today, because I saw the exact doctor I didn't want to see. So of course, nothing was done...except encouraging me to get a GI consult regarding my recent weight loss. So I'll probably go ahead and get the consult, just to be on the safe side. But as far as my chronic fatigue..not really sure. My labs showed that I was dehydrated and my WBC count dropped from 2 weeks ago. My PFTs were also down, but then again, I didn't have the energy to put behind them. I'm probably going to email another doctor tonight to get a second opinion. The other possibilities are that I am still too immunosuppressed, that my body cannot fight off these viruses I keep getting. So one doctor would like to see me stop the photopheresis to see if that helps bring my energy and WBC count back up. Also, it still could be Mono. Or thirdly, it could just be the chronic rejection. But today I felt like I've never been so fatigued in 4+ years. So we'll see how things play out.

Tomorrow I am volunteering and speaking at our local CFF Golf tournament. I've done this for the past 3 years. I'm excited, and are just praying I have the energy!! Tomorrow afternoon/evening I will travel along with a few other people to the visitation services for Angel (about a 2 hour drive). Then on Friday, I will attend her funeral service, and will have a few people tagging along as well. I'm going to try and work a little Friday morning before leaving for the funeral (which is at 12 noon). Lord give me the strength and energy to get through the next few days.

More pain

Well, the pain had subsided on Thursday. But yesterday early afternoon, it decided to return. I went to sleep shortly after work. I took another Lortab and a phenegren and slept until about 9:00 this morning. I feel "frazzled" as I've spent 75% of my time in the bed this week. I'm still nauseated. I'm still in pain. I feel weak. I have not eaten much all week. I'm tired. I'm frustrated. I barely have enough energy to hold my body up. I don't know what else to do.

Bronch

I am scheduled to have my bronch this coming Monday morning. I was surprised that they were able to schedule it for this upcoming week. When I was talking to the office staff in our transplant office, she said my coordinator requested me be set up for clinic again next Wednesday.....wait a minute. Yesterday, they wrote and told me two weeks. So I need to confirm that, and will probably just wait and do so with the doctor that is doing my bronch on Monday. I am supposed to have my photo sessions next Wednesday and Thursday as well. I HAVE to go to my clinical class Wednesday morning, because I missed last week, and there is stuff that has to be completed in order to pass the class. I'm going to have to choose between clinic and photo...I can't do both.

If I keep my photo appointments, I am going to be so run down next week. I'm already so fatigued, I'm not looking forward to being even more tired. My bronch will more than likely put me out of commission through Tuesday. Then I will be tired from photo Wednesday and Thursday. Not sure if I am looking forward to that or not?? As of right now, I will not be at work next Monday-Wednesday. If I have photo on Thursday, then I will only go to work for 1/2 day, and then a full day on Friday.

My Prograf level came back in the normal range yesterday. That's good. However, I have no appetite at all, and I was hoping it was from the Prograf. So now I am a little concerned, as I don't know what is causing that. I normally eat exceptionally well and eat a LOT. I've gained a good amount of weight over the last 6 months or so. But now...I am beginning to loose all of it. I don't want to have to force myself to eat. I haven't had to do that in awhile. Usually, even when I'm sick, I gain my appetite back fairly quickly. I do have some pounds on reserve, which helps.

We'll see how this weekend goes. My brother will be in town from Auburn. I am looking forward to seeing him. I hope to go shopping with my Mom on Saturday for some fall clothes (maybe spend some mother-daughter time). I've got a long week ahead of me next week.

Susan G. Komen Breast Cancer Walk

Yesterday, I participated in our local Susan G. Komen Breast Cancer Walk. I had been asked to participate in it by one of our HTICU nurses (our transplant floor at the hospital) several weeks ago, before getting sick. However, I decided to go ahead and do it...that it probably wouldn't hurt! I walked with 2 of our HTICU nurses. And one of the nurses brought her boyfriend and her sister and her boyfriend. I am good friends with this particular nurse, and we had a great time. There were over 13,000 people at the walk--WOW!!

It was a 5K walk, and I finished the entire thing in a pretty good time (I think). The times won't be posted probably for another day or two. We had a number that you pinned to your shirt and a time chip attached around your ankle. I had never done a walk like this, and I absolutely loved it. While I wanted to run, I didn't, and instead walked at a really fast pace. I walked along with one of our nurses, who was an older lady, and also a breast cancer survivor. She had been my nurse several days in my recent hospitalization. I was very thankful to have her walk with me. We had a good time learning more about each other. Also, toward the end of the walk, I became pretty nauseated and a little dizzy...so it was good to be surrounded by nurses. My lungs did GREAT. My legs started tiring and hurting towards the end...but I kept on. They are definitely sore today.

After the walk I went back to the other nurses house, where we ate lunch and hung out for a little while. Then I came back home and picked up a friend of mine who was in town from Texas attending a friend's wedding. She spent the night with me last night. We had lot of fun. I took her to the airport this morning, then went straight to church and Sunday school. I am very tired and exhausted, as I still haven't slept much over the last week. I also have a midterm tomorrow, so I plan on napping and studying today!

Since transplant, since gaining a lot of my strength back, and since now I can BREATHE...I really enjoy walking/jogging/running. Usually, during the fall month, I get into the habit/routine of walking/jogging 3-4 times a week. However, I usually end up getting sick, and quickly fall off the path. It's very hard to make time with work, school, and especially when you don't feel well. Well, here it is again, Fall. Yesterday was the start of my walking/running streak. We'll see how long it lasts. I plan on trying to keep it up as much as possible, and really train my body!

My GOAL: To participate in the Mercedes 1/2 marathon in February of 2009. I would absolutely LOVE LOVE to do this.

I hope everyone has/had a wonderful Sunday.

Oh...we took lots of pictures yesterday, and the website will also be posting some. So I will make sure and post those when I have them!!

Results

This morning I went for labs...ah..such a pain when you don't have any veins. It took 2 sticks to get enough blood and the final stick was in my wrist where they get blood arterial gases...

Anyway...here are the results:

Prograf: Still WAY WAY high...which explains my nausea and shakiness. So I'm decreasing my dose and will get it rechecked next week at clinic.

Magnesium: 1.6...which is pretty good for me. You would think it would be higher though after 2 rounds of IV mag.

HCT: 36---WOW!! I don't think I've ever had it that high. The blood must have done some good...to bad I feel like it's a "2" instead!

Kidney Function: A little elevated, but more than likely due to the high prograf level.

WBC Count: 2.4-which is up a smidge..but still wish it was higher. That's still pretty low. But I don't think they are too concerned now...it depends on which doctor you talk to.

Parvo results: My coordinator said, that they are NOT completely sure it's negative. The doctor yesterday got her to order a follow up test on it. So now, I have to wait for those results. FRUSTRATION with a capital "F."

I have had ZERO energy today. I woke up this morning feeling like I had been asleep for 5 minutes. I had to get up at 5:30 to get to labs early so I could get back to work as close as to 8:00 as possible. I dragged throughout the whole day. Boy...I would give ANYTHING for energy!

Last night I fell asleep in my bed while studying for my midterm tonight. I didn't quite get everything studied that I need to. Evidently, I left my highlighter opened and it bled through my sheets and left a nice yellow circle. As I've been told, I fall asleep in the middle of studying and doing school work quite frequently. HINT the pen marks on my sheets and comforter.

Christie, my CF transplant friend, is doing great! We saw each other this morning while we were getting labs. She made a cute joke earlier today that we should just build a condo on top of UAB....(since we are both there so much). I thought that was pretty funny...but so true. I feel like I live there 1/2 the time (which is NOT supposed to happen after transplant).

Oh well....back to studying...not looking forward to the midterm...wish my luck...or rather pray that it goes well. I know I need it!

Quick Update

I wanted to write just a quick update!

I am feeling better, but still not 100%. I'm very tired, since all last week I was sleeping a good portion of the day. In addition, my iron levels may still be low, I'm not sure. My nausea also seems to not want to leave me alone. I go through phases when I am nauseated all the time, and others where I'm not. I've been nauseated a lot over the past week. Also, as of Sunday, my prograf level had skyrocketed, so if it hasn't dropped yet, that could also be causing nausea. I haven't eaten anything yet today.

I am returning for lab work Thursday morning. We will then evaluate where my WBC count is, and what my magnesium and hematocrit levels are. Hopefully by then, we will also have the results from the remaining virus test. All I want is answers!

I am also returning to clinic next Wednesday. And then I will have photo the following week. So at least I will be around my doctors and be getting lab work for the next 3 weeks (including this week).

Tomorrow I have another CF study visit, to start back on the 28 days of the inhaled Aztreonam. I'm not really thrilled about starting it back, but don't want to quit the study, because I know it is very beneficial to our CF research center. So I am going to try and stick with it.

A CF Blogger friend of mine, Katelyn, sent me a sweet care package while being hospitalized! She was so sweet to think of me. Thanks Katelyn!

Also..Christie, a recent CF transplant, who I have blogged about a few times, was discharged from the hospital today to the Townhouse. The Townhouse is like a hotel/apartment where transplant patients stay for at least a few weeks when they don't live in town. Christie only lives about 45 minutes away, so she will probably only have to stay here about 1 week. She is doing awesome, but still has hurdles to jump in this recovery! By no means is it easy!

Saturday Update #2

Well, I just saw the transplant doctor who is on service for the weekend. I hate the fact that there will be one doctor on service for the week, and a different one on service for the weekend. Almost always, each doctor has their own opinion. While I like each one of the doctors on our transplant team, it gets very frustrating when each one tells you something different.

The doctor I just saw doesn't really think I have anything. He thinks the low WBC count is due to one of my immunosuppresent drugs, Imuran. Evidently, it is known to suppress the bone marrow in the body, especially when you have some sort of a virus. So he basically, doesn't have any other explanation, and really doesn't think there is one.

On the respiratory side of things, he really doesn't think anything is going on either. He thinks it's probably just a virus, and thinks the iv antibiotics are useless, and not necessary to continue. (that really pissed me off). The doctor that admitted me did so for a reason, I didn't ask to be admitted. And my symptoms were all respiratory related, including cough, wheezing, shortness of breath, fatigue, etc. And the initial plan was to do home iv antibiotics anyway since I had already been on the oral abx that would work. So now, to just have 4.5 days of iv abx...kind of ticks me off. Who do you believe??

Then he asks me or rather states, "You aren't having any sinus issues are you?" And I replied with a "yes, I've been having sinus issues, and think this is all where it started from. We've been trying to knock out the pseudomonus my ENT cultured about 1month ago." Then he asks me why isn't it documented? Well, I don't know. But I sure did tell the doctor and CRNP that admitted me. But then again, he thinks the iv abx will be pointless, and thinks that I should be discharged tomorrow. I don't have a problem with being discharged, but I do have a problem with not continuing the iv abx. Rather, I'm really really frustrated with his plan. I guarantee you if the other doctor from this week was on right now, he would probably keep me a few more days and let me continue the abx at least at home. It's almost like you have to convince some of the doctors you are sick, because they just don't believe you. Why and how could I fake wheezing, coughing, shortness of breath, fatigue, etc. And why would I want to do that? I have a job and are in school full time. I want to miss the least amount of days possible. I didn't ask to come in the hospital, but thought I needed it and it was for a good reason.

So, now I really don't know what to think. I'm kind of in a foul mood right now. One of two things are going to happen: Whatever this is, ends up being just a virus, and it runs its course, and everything is ok. My WBC count will come back up. Or, 2)this is some sort of respiratory infection, it doesn't get knocked out since he is stopping the abx, and it later turns into actual pneumonia. And if that happens, you know good and well, who I will blame for that.

Sorry for my ranting...I'm just really ticked off right now.