Photo for chronic rejection

I am starting another round of photophoresis tomorrow, October 17th for the progression of my chronic rejection. I've talked about what this is on my blog before and most of you know I have already completed 2 rounds (15 mths each round). My doctors are hoping that somehow this round will stabilize me some like the last rounds (the last rounds did not reverse or improve anything but apparently it stabilized me somewhat...i like to call it remission). I don't have my hopes up...but I do trust my doctors. More importantly, whatever happens, is God's doing, and is always for his glory. I am having a hard time actually grasping the situation that my chronic rejection status is not good and prognosis isn't good. I believe that everything will work out...that I will graduate in May, and start working as a nurse and go on to live a long and fulfilled life. I am taking it day by day. I'm not at peace with doing another round of photo, as no one at UAB has done that, let alone Duke I think. So it's any iffy chance. But please pray for me and that this photo will work, but more importantly, for me to feel peace from the Lord about whatever plan lies ahead. Thanks :)

Questions for those @ Duke/update

I have a question for my fellow bloggers that go to Duke-that have been transplanted, currently thinking or evaluating for transplant there.

But first-quick update: I was discharged from the hospital Aug 15th-1 day before classes began. I spent 3 weeks in the hospital-the most I've ever spent since my transplant. I completed 7 days of thmyoglobulin. My low grade fevers ended up being due to C-Diff infection which completely wiped me out. I have now completed almost 5 weeks of oral Flagyl and 2 weeks of oral Vancoymcin. After returning home, the effects from the thymo were horrible, and still remain somewhat. I am slowly getting better. My oxygen saturations have been much better-upper 90s at rest and 88-90 with exertion (with no oxygen) which is better than 82-83 with exertion before the hospital and around 85-88 at rest before the hospital.

I am scheduled to begin photophoresis within the next week or two. I am thinking about getting a 2nd opinion regarding my chronic rejection and history this last year. Although I don't doubt I have chronic rejection, part of me feels like there is something the docs are missing. I am not 100% positive that I need photophoresis or that is the right treatment protocol for me right now, considering I've already done it twice in years past. I'm not in complete agreement with my docs on how much the chronic rejection has progressed. Although I only have 30-40% lung function, I'm not convinced some of that is due to only having lobes and not full lungs. I know Duke is familiar with living donor transplants.

If I do precede with getting a 2nd opinion, I will travel to Duke, as I feel its the best center that is the closest to me. So if you have any experience with chronic rejection or transplant at Duke-i would love some info. Even just general info about the docs and transplant team. Or-if any of you have had different treatments for chronic rejection at another center-please feel free to discuss as well as my options are open right now. I want the best for me, and my lungs have definitely deteriorated over the last year or so.

I am managing to make it through classes, but still get really wiped out. I started my 1st IV on my patient last Friday. Off to clinicals again tomorrow and again Monday.

Sorry-Here is an update

Sorry for the long time lapse since last posting. It's been a little busy around here. I'll give more details and catch you up on what's going on throughout the week.

But just briefly: I finished IV abx April 15. Luckily, i have not had to go back on IVs since then. I am though currently taking oral Cipro antibiotic.

I finished up the spring semester with B's. I actually start summer semester classes today-Monday the 23rd. I had a two week break.

Last Wed i went to the beach with some family. I got back yesterday (Sunday). The weather was beautiful, but very hot Saturday; no rain (which was nice), so i was able to enjoy being outside for 5 days. Definitely a relaxing trip. And i think the beach air really perked me up and i felt so much better. I'm still on Cipro for another week, and still using oxygen, Xopenex nebulizer and oxygen at night. However, my oxygen saturations have been a good bit better and I've been able to decrease the amount of oxygen i wear at night. So praying that i feel great this summer, since i have an extremely heavy load of classes.

Our local CF Great Strides Walk went extremely well! I will post about that later.

Hopefully you haven't given up on me blogging :) I still read your blogs, but hopefully I'll be more consistent with updating and posting interesting, fun things that are going on with me :)

More updates to come!

Neverending

Crazy. I can't think of a better word to describe my life right now. Some of its a "good crazy" but not all of it.

To update: I had my bronch last Monday, the 4th. All went well. I did require more sedation than last time, but for some odd reason it didn't take me as long to sleep it off. Once I got home, I slept for about 4 hours. When I awoke, I was sort of in a panicky-agitated mode. I couldn't breathe. I was extremely nauseated, shaky. I couldn't move. These are common side effects after a bronch, but the extent to which i was experiencing these was much more than I had in the past. However, I just told myself it would go away, and I spent the next 5 hours trying to overcome these adverse effects. At about 9:30 or 10:00, clearly things were getting better and I was having an extremely difficult time breathing. I called my doc (the doc on call was the one who happened to do my bronch-and my fav); he was concerned and told me to come to the ER. One of the concerns after a bronch is a pneumothorax. I was having pain on the side they did the biopsy, so it was definitely a possibility.

(on a side note: I did notice that my WBC count had increased that morning to 10,000 from 6,000 the week before. That is very unusual for me, and it actually pretty high, as I normally run around 3-4,000. Also, I had felt ok prior to the bronch, and even went to take a Psych Exam at school prior to the bronch)

So on arrival at the ER, my Dad signed me in, and I sat down. Then he told them about how i was transplant, and had a bronch that morning. My ER does a really good job about taking transplant patients right back-even skipping triage area. So once they signed me into the computer and took baseline vitals, everything went extremely fast. I did have a fever when i arrived, a high heart rate, and O2 sat of 85% on room air. Once I got back to the room, they did blood work, stat xray, EKG...the works. After about an hour or so, things finally calmed down. I was on 4 liters of oxygen, hooked up to all sorts of lines. They wouldnt even let me get out of the bed too pee without my oxygen (even thought I knew i would be ok-UGH). My lab work came back and it was all out of whack. My WBC count was now 16,000. My xray was also suspicious of pneumonia. UGH!

So I got admitted...finally arrived in a room about 2:45 AM. LONG day/night. My doc thinks it was just a reaction to the bronch. He said since they stir a lot of things up down in your lungs, you can have increased WBC counts. However, he said they never see them that high. I did receive 2 doses of IV Vanomycin, Tobra, and Ceftaz while admitted. So my doc thought it was safe for me to be discharged. I told him i had to be at clinicals Thursday anyway...and i was already doing IV Ceftaz at home. My NP, however, was concerned, and didn't want me to go. But i guess the doc wins in that situation. When I left, my WBC count had actually increased to 18,000. So she just told me to have a really low threshold and report any minor/little thing.

I ended up feeling fine on about Friday last week. I felt pretty good over the weekend too, and soaked up a lot of sun. However, yesterday I felt horrible and had a really high resting HR. Today was some better, and I'm hoping yesterday and today were just off days. I finish my IV antibiotics Friday, and return to clinic next week. My oxygen levels are still struggling, as several days that have been below 90% at rest. They are 86% and below with excertion (even saw an 82% today-UGH). But then i've had days where they are in the mid 90s...so it's really a confusing cycle here. Still sleeping with oxygen. I'm praying that this infection will be rid of for a very very LONG TIME as it's been really hard keeping up with school.

Tomorrow is our last day of Psych clinicals. We have 2 more weeks of classes until the end of the semester..YAY. Definitely ready for my 2 week break.

Bronch moved up

My bronch has been moved up to this coming Monday, the 4th. The doctor that is doing it was booked solid for the Monday we had planned on, and he didn't want to wait any longer, so it's scheduled for this Monday. BLAH! Now my studying stuff is going to be off. I have a Psych exam Monday from 8:00 to 9:00 am. So I'm going to go take my test (have my Mom drop me off), then leave as soon as I finish to get to the appointment, which is at 10am, but they like us to be there about 30-45 minutes before, not to mention I have to get labwork before the Bronch. Maybe I'll do that before my test???

I've very tired and very short of breath today. But I did manage to get one chapter of Psych notes typed up. I'm going to end up being out of commission the remainder of Monday after the bronch and possibly most of 1/2 of Tuesday..and have a lot to do, including a major Pharmacology Assignment, which usually takes at least 10 hours to complete. Yikes! Class Wednesday too, and clinical Thursday. So I guess I'll work on the Pharm assignment as much as possible Tuesday, Wednesday night, Thur night, and Friday up until the time it is due. I can't work on it this weekend, because I have a test Monday that I need to study for...AH....this sucks.

Cycling

It seems like I've been on a cycle of being sick and not being sick since about October of last year....it's getting kind of annoying. And I Hope this is the last time I'm sick for a good long while.

I did 2 weeks of home IV antibiotics starting Feb 23rd...so ended these about 3 weeks ago. I also did steroids at that time, as well as went on supplemental oxygen at night and during the day if needed. After I finished the 2 weeks of abx, I did feel somewhat better for about 2 weeks. Then last week I started getting sick again....but then had 2 days where i felt pretty good (guess it was the "Calm before the storm"). I already had a follow up clinic appointment schedule for today (Wed); However, Monday I felt a whole lot worse, and my oxygen sats had dropped to 82% while walking to my car at school. They had been around 88-89%, although there was an 85% one day last week. I also had a low grade fever Monday as well, and a productive cough decided to present itself along with everything else. I called my coordinator and I started on Cipro Monday evening; We agreed that I would be ok to wait to be seen until clinic today, after talking with my coordinator again yesterday (Tues);

So the verdict from clinic today was: still nothing major showing on my xray; PFT's about the same as last visit, which wasn't good. I had the choice of coming in the hospital or doing home IVs again; so I chose the home IV route, since I'm still doing clinicals for nursing school. So I'm doing Ceftaz for 2 weeks in addition to oral Cipro; continue the oxygen; and another steroid taper.

We also talked about doing a bronch to check for rejection; he said it was probably not rejection, but that you never know so it's probably a good idea. I haven't had a bronch in about 1.5 years. We are going to schedule the bronch, for hopefully April 11th-a week from next Monday. I only let one particular doctor do my bronchs; I have a test next Monday and other assignments, etc., so he was fine with waiting til the following week.

This really takes an emotional toll on me as well as physical. Round 4 of IV antibiotics since October....definitely not like me (or it's never been this close together); hoping this does the trick or we figure something else out that clears this stuff up for good. It's really hard going to class when you can't breathe very well. But i'm determined to go and not miss class; I'm supposed to take it easy, per doc and coordinator orders.....just trying to decide how and what area I'm going to do that in????

I will definitely update after the bronch or when i know results from it or if anything happens before then; School is crazy and we are, thankfully, nearing the end of the semester. One more exam in each class in addition to ATI exam (which mocks our licensure exam); 1 more pharmacology assignment; 3 more Psych clinicals; we are required to attend an open public AA meeting for Nursing Psych class; so i did just that tonight. It was very interesting. I have several papers to write for that class too!! Crazy!!!

Good night...clinicals tomorrow, so need some rest. Looking forward to the weekend, and most of all, hopefully feeling better, especially more energy and higher oxygen levels.

Recap: About Me-Part IV-Final Post

Picking up from the previous post: About Me-Part III......here is Part IV-the final post.

It was Sunday night before the transplant. I was really sick, and didn't know much of what was going on around me. I remember my Dad and brother coming up to see me that night, but that was it. I don't remember anything from that point forward. Evidently, the decision was made to precede with the living donor transplant. Although my parents claim they told me about it, I have no memory of that and seriously had no idea I was about to be transplanted. I think this was another blessing from God, as I didn't have to worry or experience anxiety like most everyone else would before a major surgery like this. God held my hand through this and took all the pain away. The doctors "gave" me just a few days to live, so in order to save my life, this is what had to be done. On Monday, things kept getting worse, and my CF doctor decided that I needed to go ahead and be put on the ventilator. The transplant was scheduled for Wednesday morning at the University of Southern California in Los Angeles. I would fly by MedJet Tuesday morning along with my Mom and my other donor. My Dad would fly out there with our back-up donor, and my donor's brother, would fly out as well.

On Monday, my mom and my other donor had to undergo numerous tests at UAB, so a nurse, who was also a close friend, stayed with me Monday. My CF doctor came in to discuss putting me on the ventilator and told me that about 50% of CF patients who go on the ventilator are not able to come back off of it. My response to that (as I was told...remember I have no recollection of this)was "That means that 50% DO come off of it, right?). I held my CF Dr's hand as they took me down to ICU and prepared me for the ventilator. My Dr. let me use his cell phone (or someones..not sure who's it was) to call my Mom, who was at UAB at this time. My Dad was preparing for the trip to California (there was a lot that needed to be arranged). I called my Mom and told her "Bye" and that I would see her soon with my new lungs. My Mom said she could hardly hold herself up at that time, being away from me, and knowing that there was a pretty good chance of me not making it through the night.

Tuesday morning came along, and the doctors called my parents early that morning. The plan was for everyone to meet at the airport, but plans changed. They didn't think I was going to be stable enough to transport. My CO2 level had already risen to about 4 times normal and things didn't look good. My Dad told me the weather was horrible that morning too. My Dad called one of our friends (our back-up donor), who was also my parents Sunday school teacher. My Dad told him to just pray, pray. This guy, when he got off the phone, called everyone he could and told them to pray. Within 10 minutes of of my Dad making that phone call, by the grace of God, things began to stabilize enough and my Dad said that I had never looked so peaceful as I did that morning. At that moment, he knew everything would be ok.

Upon arrival at USC, I was immediately sent to the ICU. Mom and my other donor had to do some more tests to prepare for the next morning. Shortly after arrival at USC, I began to deteriorate and one of the Transplant Nurse Coordinators tracked down my Mom and told her that the only way I was going to live until morning, was to be placed on ECHMO, which is a heart-lung bypass machine. This machine performed every bodily function for me. At this time, my CO2 level was 5 times normal (211). A person with this high of a CO2 level does not live. A normal CO2 level is between 35 and 40. God helped me hold on until the next morning, February 25th, 2004, and the transplant was a huge success. I was told my lungs crumbled into pieces as they were removed from my body. The surgery definitely had it's worries and concerns. Imagine from my Dad's point of view: his wife, daughter, and best friend all in surgery at the same time, and are running the risk of loosing their lives as well because of the risky surgery. But again, by the Grace of God, everything went smoothly. I made it through the surgery with "flying colors" but I wasn't out of the woods yet. The transplant team expected me to have brain damage, kidney damage, etc., because of the record CO2 level and being placed on ECHMO. Once again, God had a plan for me, and I didn't incur any of those complications.

The recovery process at USC was the most intense and painful experience, both mentally and physically. I stayed on the ventilator for about 4 more days after surgery. As soon as they took the breathing tube out, I realized I could BREATHE...one of the most awesome feelings EVER for a CF patient. Because I was so sick and weak prior to transplant, and with the addition of paralytic drugs, I was completely paralyzed afterwards. I couldn't move any part of my body by myself. This was the most frustrating thing, as I depended on everyone to do everything for me. My arms were so swollen and filled with fluid, they were too heavy for me to lift them up on my own (same goes for the feet/legs). About 2 weeks after transplant, I began to experience stomach issues. I ended up having an intestinal blockage, which required immediate surgery. This was performed about 1 month after the transplant, and in my opinion, was some of the worst pain ever experienced, even more than the transplant.

Because I was paralyzed, I had to re-learn how to walk again (yes..not just strength but even the technique of walking). It was 6 months later (in August) that I was actually able to walk on my own, without the help of a walker or wheelchair. It wasn't until October of that year that I began to drive again. It also took a long time before I could feed or bathe myself. Because of the lengthy and painful recovery process it was hard for me to realize I was improving. But I did, each and every day. We had millions of people praying for us, and an awesome team of surgeons, doctors, physical therapists, etc. at USC. I didn't think it was possible for me to walk again. But then again, God proved me wrong.

I spent 3 months in California, before returning home to Birmingham. I missed every one at home so so much, especially my brother. It was a truly hard experience but I wouldn't trade it for anything. And if you don't call this a miracle from God, then I'm not sure how you explain it. I truly am a miracle from God and are alive today to share this with others and continue to glorify him in everything I do. As of right now, I was the sickest patient USC has ever transplanted, and had a record CO2 level that anyone at USC, Children's and UAB had ever seen.

Currently, I'm doing pretty well. I have had my share of post-transplant complications in addition to several other things. But transplant complications are so much different that what CF patients experience, and in my opinion, are far easier to deal with.

I graduated from UAB in May of 2009 with a Bachelor of Science degree in Health Information Management. After graduation, i decided I wanted to go back to nursing school. I am currently in my 2nd semester of nursing school at UAB, and will graduate May of next year (2012). I received a full-academic scholarship, which was only awarded to 2 people in the program. It's a blessing that I'm able to pursue my life long dream career of becoming a nurse. Nursing school is stressful, but exciting at the same time.

So...that wraps up the Recap posts: About Me. I hope this was informative for my new readers/blog followers!

Wow!

I can't believe it's mid-February, and I haven't posted since January. My apologies. I'm guessing most of you don't get your hopes up anymore for me to post. Nursing School has control of my life right now :)

But I wanted to write a quick update. Picking up from where I left off...being discharged from the hospital...everything is going well. No more stomach issues. Things seem to be back to normal. I had lost about 10.5 pounds from this hospital stay. I have managed to gain back about 3-4 pounds (depending on the day). I've also switched to Creon Enzymes, due to Ultrase not being manufactured anymore. So I'm also trying to adjust that to where it needs to be. So far so good. For the most part, the lungs are doing well...just a minor cold here and there.

School is good, but extremely stressful. Being out for 2 weeks at the beginning of the semester through me back, especially with having to take an exam the day after I was discharged, and another exam the following week. Needless to say, I didn't do too well on those 2 exams. I had my 2nd Pharmacology Exam today, which I made a B on. While I'm happy, I had my hopes on making a high B or an A, considering I had been studying non-stop for 2 weeks.

In other school news, I had to medically withdraw from my OB class/clinical at the suggestion of the professors. I had missed a couple of labs while in the hospital, and upon meeting with the professor, I was told I couldn't make those labs up. So 2 classes were knocked off my schedule for this semester. I will take the OB lecture and clinical this summer. Thankfully, it won't put me behind, I'll just have those extra 2 classes this summer on top of the other 3 classes. So I'll have 5 classes and 16 hours in about a 10 week period...YIKES!! But again, I would have hated to have to drop back and lose my great friends I've met in nursing school. So I thought this semester would be much lighter, which is still is, compared to what it would be, but it's still extremely busy and stressful! My Psych Clinicals start March 3rd. I have to say, that out of all the Nursing Classes, this is the one that I'm NOT looking forward to!!

Other Miscellaneous news...I had a Birthday on February 4th....26 years old. I feel old. I wish I could go back a few years!! My 7 yr transplant anniversary is coming up on February 25th (next week), which I am extremely thankful for.

I need to start on my stuff for our upcoming CF Great Strides Walk. Our Young Professionals Board is going well. I am Co-Chair of our board this year, which means I will be Chair of the board for 2012. I'm really excited.

I'm trying to keep up with everyone's blogs, but my time is limited. For those of you on facebook, I'm able to keep track more often :) I hope everyone is having a great week. I'm about to go out for the night...get my mind off school. Tomorrow and Friday will be spent doing a Pharmacology Assignment.

Until next time.....

Happy New Year/Back to School

HAPPY NEW YEAR TO EVERYONE!! I Hope everyone had a wonderful Christmas! I know this year is going to be awesome...and I can't wait to see what is in store for 2011!!
I start back classes tomorrow-Tuesday...wow...time flies by! I'll do my best to keep up with blogging. Hopefully it won't be as busy or stressful as last semester :)


I started getting sick again at the middle of last week. So, I started on another round of oral antibiotics (Cipro) for 2-3 weeks. I've only been off the IV antibiotics about 2 1/2 weeks...so praying the Cipro knocks whatever this out and i can start the new semester off feeling good!

A Couple of New Year's resolutions:
1.     To be a better Christ follower. To make more of an effort to attend church and Sunday School more often (I did a horrible job of this last year....using excuses of school and health...although a lot of times it was legit). I attended Sunday School yesterday-Sunday-and joined a new life group, which is sort of like a small bible study and accountability group. I think that will be great and help keep me connected during the school year. I get caught up so much with school and other stresses of life, that I forget and don't make time to spend with God.

2.     Another resolution...to be on time!! I used to always be on time or even early. Now I find myself rushing everywhere...either arriving just on time or a little late.

3.     I also want to decrease the procrastination I have in me when it comes to studying...lol!! I don't wait til the night before, but I really need to start studying every day so i don't have to cram before exams :)

4.     EXERCISE!! I say this every year. It's more of a time conflict than a motivation issue. I am motivated and want to do it. But with nursing school, there is literally zero free time, and if you have free time, it's spent studying. So I'm going to try to at least do the exercise bike we have at home a few nights a week. I do get a lot of exercise (more than before) in with nursing school, and I think it has helped me feel better and increased my breathing capacity (although i feel like i can't breathe..lol) as well as my O2 saturation. So we'll see where this leads too!.

5.    And last, but not least: be a better sister. My brother and I get in so so many fights (verbally) when he comes home for holidays. I always tell myself that it's not going to happen and I'm just going to ignore things he says that makes me mad, and try to watch what i do as well. But it seems like it never happens. So I am really, seriously, going to make an actual effort to get along with my wonderful brother...always :)

Ok...I'm up late...need to go to bed. Lots of stuff to do today (Monday) before class tomorrow! For all of my fellow CF and Transplant Blog Followers...I will be praying that 2011 will be an awesome year for you and that you will feel amazing and be able to do amazing things. Hang in there! Love you all!!


Happy 2011!!!

IV Abx/Semester over

As I mentioned in the post before last, I haven't been feeling so well. The Cipro did get me through last weekend and the last few days of school this week. I called my transplant coordinator to get the final results of my sputum culture. Unfortunately, it grew moderate amount of pseudomonas. So this is definitely why I wasn't feeling good. I always have pseuodomona in my sinuses, but we try to keep it from going down into the lungs...and that's what it did.

Unfortunately, I'm not fully sensitive to any oral antibiotics that can kill this bug (or really any bugs). So I had to start IV abx. Luckily, she let me start them at home first and see how I feel. If I start feeling better, then i'll continue doing them at home. If I don't feel a whole lot better by Monday, then they will probably admit me.

I really didn't expect my culture to grow anything...but at least I was able to do a culture and get the right abx to kill the infection.

We had our CFF YPB Christmas Party last night. It was a lot of fun!!

I finished out the 1st semester of nursing school with 2 "A's" and one "B." Not too bad. I'm so proud of myself for being able to complete it. It wasn't the easiest thing with my health acting up towards the end and one hospitalization. But the Lord got me through it and I am so thankful. I can't wait til next semester!!!

In other news: My aunt passed away last weekend, so we have a service for her tomorrow. Please keep her family (she has a daughter and a son), as well as my Mom and her other 2 sisters in your prayers. This was definitely unexpected. She was only in her early 60s (i think she just turned 60) and died of a hemorrhagic stroke.

Also, my brother graduates college on Monday. I'm so proud of him. He has also already secured a job, which is great! I love him so much!

Well, that's all for now! I'll update you later! I hope everyone had a great week!

Almost done!!

I never would have thought that my blogging days would be so few....who knew?

Anywho...the semester is almost over. I have a final exam Monday, Tuesday, and Wednesday and then I will be done!!

YAY!! I made it through the 1st semester of nursing school....i can't believe it!!! I'm so proud of myself!!

So i promise more blogging time now that i'll have a break from school. I really haven't had a break from school since last Christmas since i only had 1 week in between spring and summer semester and then in between summer and fall semester. So i'm really looking forward to it.

In the health world...things aren't so hot. I starting "dragging" last weekend. Then Monday and Tuesday i got sick....real sick. I missed class Tuesday morning and had to suck it up and go to clinic on Wednesday, which caused me to miss class then too (which was the last week of school--so that sort of sucked). I went to clinic and labs and xray were ok...but i definitely had some sort of respiratory infection because i had been running low grade fevers and had coughing, wheezing, fatigue, and "all of the above." So I got an oral antibiotic to add to my inhaled TOBI. I started feeling a little better yesterday and feel a little better today. If for some reason I don't keep getting better or backtrack, then they said they will do a bronch and restart IV abx. So I'm just praying i make it through next Wednesday. My PFT's had dropped a good bit (but I also haven't done them since June)

So dinner and movie at a friend's house tonight. I've really enjoyed hanging out with my friends i've met this first semester of nursing school! I really hope that some of them are in my clinical groups next semester!

Off for now...but promise i'll be back SOON!!

Going Home

So...the plan is for me to go home tomorrow (Thursday) on home IV antibiotics. YAY!! At least I can go home and rest there. Although there is a lot of stuff I have to do this weekend. I should be back at class Monday. Hopefully my abx schedule will work with my class schedule so I don't have to miss any classes or a part of a class.

I do have a Pathophysiology test Tuesday. So I've got to really study for that this weekend. There is a review session Friday and Monday. I'm going to try to go to both of them, as I'm really behind in this class. It's the only class that doesn't take attendance and it doesn't "kill" you to miss it. I have the notes from friends of mine, but still need to study.

I also have a research paper due next Friday. Guess I better work on that this weekend too :)

So the results of the ECHO...my heart is fine...thank goodness. Nothing to be concerned about right now. My nurse practitioner said I have a healthy and beautiful heart :) My doc said that we will monitor it and if things got worse, I can get a heart cath done to check for the pulmonary hypertension. Evidently, the results from an ECHO aren't all that accurate and you really need other tests to confirm it. But there is nothing that indicates I would have pulmonary hypertension or that I needed other tests. So that is good news.

In the heart rate world...it is still high. It may just be that this is my baseline and have been hanging around this # for awhile. I don't really monitor it that much at home, except when I do an occasional BP check (which is usually at rest). And hopefully my heart rate will get better with another week of IV abx. My O2 sats are hanging around 90% when exercising...which is better. And these #'s should also get better with another week of abx.

So please pray that all goes well with doing home IV's and getting back into a normal routine, especially with school.

Hospital Day #6

Going on day #6 in the hospital. I have cabin fever really bad. As I mentioned before, I had hoped to be back in class yesterday (Monday) or at the latest by today for clinicals. Unfortunately, that didn't happen. Hopefully Thursday will be the day. I will still be going home on Home IV's though. I have several things on Friday, including a Nursing School Luncheon that i'm working at and a CFF Young Professionals Board Fundraising Event. I also have a Pathophysiology test Monday.

My Heart rate over the weekend was higher than it had been earlier in the week. On Sunday, my doctor decided to walk me around the nurse's station and monitor my O2 saturation while walking (since my Heart Rate had been higher). He got a reading of 83% (which wasn't good). I'm not entirely sure it was accurate. I re-walked myself, while monitoring it later that night, and it ranged from 87-90%. So it's still too low. I also am having some really low BP readings (one day is was 80/38). They held my BP med yesterday and today. And tomorrow they are starting it back but at a much lower dose.

So the doctor on call this past weekend, suspected that maybe something was up with my heart. So I had an ultrasound to check for DVTs (deep vein thrombosis...blood clots). I also had an ECHO today. The ECHO technicians kept talking (which I hate when I can't see the screen or they "talk behind my back." However, one of the techs asked me if I knew I had pulmonary hypertension. I said no....no one has ever said that and I never have had it. So I'm guessing I might have some now? A little worried about that.

So..my heart rate is still really high...but other than that, everything is going ok. Still need my O2 sats to get better as well. I can tell that they are low, because i'm getting these massive headaches.

I did have a rough day yesterday morning with nausea and throwing up. And then that sent me into tons of pain. So yesterday was definitely not a good day. No sleep at all. And plus I was drugged with so many meds yesterday including pain meds, that today I've been really sleepy.

My clinical instructor from school came by and saw me today on her way to our unit where we do our clinicals. I wasn't as nervous as I thought I would be with her coming by. She was really sweet. And it looks like that missing clinicals this week is not going to affect me passing the semester, because I had been doing really well so far. We'll see.

Ok...so I'll update again soon!

Hospital

Ok, so I totally thought I posted Wednesday morning after my doctor's appointment. But I guess not. Needless to say, I got admitted Wed to the hospital (HTICU) after my appointment. I did go home and pack a bag, then came back. So going on day 4 being in the hospital.


The main reason I was admitted is because I wasn't responding to the oral antibiotics with this infection. I'm only sensitive to 1 oral abx (Cipro) and it wasn't doing the trick. So IV abx was really my only option. I really didn't expect to be admitted...seriously..and was kind of surprised that is what they wanted to do.

The original plan discussed during clinic was to come in for a few days, then go home on home IV antibiotics. Plans change all the time, and honestly, I don't know when they are going to let me go home. I have clinicals this week for school (pre-clinical Tuesday then clinical Wed and Thurs) so I really want to be out by Tuesday morning. I'd like to be home by Monday. I thought I would be going home tomorrow, but that's out of the question.

Nothing really different to report other than the same ole stuff. I'm getting IV antibiotics, and just being watched carefully. I had been having these episodes of chest pain, which know one has identified the cause to yet. In some respect, they are monitoring this, but the main doc said I could come for some tests as an outpatient that he didn't want me doing them with an acute infection.

I'm trying to walk as much as possible. Today I've been much more SOB and have had a much higher heart rate while walking. But hopefully that will get better.

I told myself I would study today. Did that happen...NO!! I'm watching the Alabama Football game now. Maybe study tomorrow. I'm so behind :(

I'd appreciate your prayers for a speedy recovery and for everything to work out with school. I'm stressing big time about school.

I hope everyone has been having a good weekend

Random

This is a very random comment....

I figured out a way to make me take a quick shower and not linger.....have a cockroach on the celing above you :)

I HATE bugs...especially cockroaches. I spent the whole time talking to the cockroach while in the shower making sure he wasn't moving any closer to me.

Sorry...I know that was completely random :)

On another note...we have fall Break this week. We get a whopping 1 day off of school. It's technically 2 days, but we are always off on Fridays. This doesn't mean no studying...just no classes. And my Thursday is already booked with appointments. I have my mid-term evaluation with my clinical instructor. I also have a CFF Meeting.

I travel to transplant clinic tomorrow. My health has been holding up, but over the last week or so, I feel like I'm going downhill. I've also started to spike low grade fevers over the last few days. I'm also extremely SOB and more tired than usual. So I'm leaving class early tomorrow (which is a 1st) so I can get to clinic in time. They only have transplant clinic Wednesdays and most of the time they are done by 12 noon. I have to go at 6:00 am to get labwork and chest xray. Then I'm going back to class at 8am until about 10:00 am then hopefully be over at the hospital/clinic by 10:15. Thankfully campus is right next to UAB Hospital, where my transplant center is. And thankfully our instructors are not teaching us anything new tomorrow in skills lab since we are off on Fridays. We are just reviewing what we learned last time. So...I'm hanging on by a string, and I still think it's awesome and feel blessed that I have not been in the hospital since January. I plan to keep that going...but may need a boost of something. I never knew how stressful and exhausting this would be!

I still have the 3 fractures in my foot. They discovered at my last appointment that I have 2 stress fractures instead of 1. I don't really have any pain, but my ortho doc said it would take 6-8 more weeks to heal (and that was 3 weeks ago).

I'm sorry I'm lacking on blogging. Today is the 1st day I've sat and watched TV for a few hours...and that's only because I skipped my morning class and they let us leave early from our afternoon class.

I started watching the news coverage of the Chilean (is that spelled right?) Mine Rescue. I had no earthly idea this had happened. I told my Mom that I need a current event review every few weeks because I never get to watch the news...lol! Isn't this rescue amazing!!

I will post a report from my clinic appointment tomorrow!!

Oops!

Obviously I haven't kept my promise about blogging. As I've gotten more into the school year (a month in)....I can tell you that there won't be much time for blogging this semester (maybe on holidays). It's so time-consuming, exhausting and just crazy all over. No time for sleep....just class, clinicals and studying. And with my body.....I really need extra sleep, but it just isn't happening. So blogging is definitely not a priority right now.

I'm still "well" but have definitely been dragging this week. I had a low grade fever Thursday and barely any energy all this week, SOB, etc. I got labwork and chest-xray yesterday. Everything turned out ok (with the exception of being dehydrated). My coordinator wants me to rest as much as possible (haha) and call her Monday. Nursing school is 24/7. It's what I asked for, but I don't think I knew how exhausting it was going to be. When healthy people are complaining about being tired, stressed, etc., you know mine is much worse. But praise the Lord, I've been able to handle it. At least the "stress" part isn't anything new, since I've already been through round 1 of a college degree and used to juggling my health with school. This time it's just much worse!

We learned how to give injections this week :) I had my 1st big test this past Monday and I made a "B" which is awesome!! Another test (in a different subject) this Tuesday, along with LONG clinical days and much much more! Boy will I be glad when the semester is over :) But through all of the hard part, it is fun, and exciting! (so don't think I hate it). UAB is one of the toughest nursing schools there is, but they "produce" some of the best nurses!

Not sure where I left off with my foot...but it did end up being a stress fracture. The doc in the box said it wasn't broken, but the pain was too much for it not to be. So I sought out a really good orthopedist and indeed, it was a stress fracture. I've been using a bone stimulator to help along the healing process. It's amazing how much of the pain is gone and how much I can tolerate walking on it. It's a really cool device that you just strap on your foot for 20 minutes twice a day (or sometimes once a day in my case). It almost feels like it's not broken any more. I get it xrayed again on Monday...so I'll find out then how it's healing!

I've also been busy with our CFF Young Professionals Board. I am chairing a committee for our upcoming signature event, "Dodge CF" (Dodge ball event). More details to come later! Lots of stuff going on in the CF World...transplants, events, etc.

I might (hence, the word might) try and write more this weekend. But I have tons of studying to do...and sleeping :) So don't be upset if I don't update again. Next week is busy solid...all week, so next blog update probably won't be for a few weeks! But don't give up on me...I still get time every now and then to read your blogs! We have a fall break coming up, and Thanksgiving before you know it. So I know I will get some blogging time in then!

Please continue to pray for strength, energy and just an overall "healthy" body!

Oh...and Roll Tide :)

I'm still here :)

No, I haven't forgotten about blogging!! I've just been super busy!! As most of you know, I started nursing school this semester. It's a big change, especially in my schedule and I'm still trying to get adjusted. The 1st two weeks were hectic, with orientations and 8-9 hour long days. This week, finally, we are on our set, normal schedule for the semester. My group starts clinicals next week! I'll catch everyone up-to-date this weekend with school, health, etc. But just wanted to let you know all is good. I've attached a picture...it's not the best picture, but I was so excited to have my uniform and stethoscope :) And yes...our school of nursing has white uniforms, which I don't particularly like.

Prayer requests:

The 1st week of classes, I did "something" to my foot. The amount of walking I'm doing is excessive...but nothing I couldn't or can't handle. However, my feet starting hurting that 1st week. I contributed the soreness and pain to a bad/uncomfortable pair of shoes. I only wore the shoes for 2 days, then switched to another pair. But the pain continued to intensify. My right foot is in a serious amount of pain-excruciating. We suspected a stress fracture. I finally got it xrayed this past Friday. Nothing showed up on the xray, but the doc said I could still have a hair-line fracture that didn't show up. However, the break on the same foot (but different spot) that happened back in March/April of 2009, evidently, has not heeled...which is just great. So now my foot, i'm sure is pretty screwed up. I'm staying off of it as much as possible at home, but can't not go to class. And I have to park many blocks away from the nursing building and it includes some hills, which is not good either. I am being referred to an orthopedist to get a better look at what's going on with my foot. For right now, just pray that my foot isn't too messed up where it would need pins or surgery to fix the "old" break. Also pray for the "new" pain I'm experiencing in my foot. I don't currently have any pain from the "old fracture" but do have flare-ups every now and then...UGH!!! You finally do good health wise, and something else always goes wrong!

Ok...so the brief update turned out a little longer than expected! I promise I will post more this weekend!! I Hope you haven't given up on me :) And I hope everyone is having a blessed week so far. I have had a little time to read other's blogs!

It's Over!

Summer semester is officially over. I took my last final exam (which was in my developmental psychology class) this evening. Although I struggled with the course at the beginning and complained about the amount of work give, I ended up pulling an "A" in her class. I ended up with a "B" in Microbiology. I know that's not bad, but it still brings down your GPA, and I was really hoping to get an A in that class as well. But like always, other life events interfere, so I'm thankful that I achieved what I got.

So I have about 1 1/2 week break before fall semester....nursing school....starts back up (August 17th).

I babysat all day today, babysitting all day tomorrow, babysitting for a few hours on Sunday. Hoping to get some pool time in with a friend this weekend...hopefully. And then next weekend I'm going to Nashville to visit one of my good friends for a little "mini vacation." I have my Nursing Orientation Session next Friday from 9am until about 1:15 pm then will leave from there to Nashville. Then I'll return Sunday. Classes will start back up that Tuesday, which I am excited about...just wish I had a little longer break. I also already have 2 babysitting jobs that Wed and Thursday night of the week school starts.

More blogging to come. I forgot to blog about my wonderful ER visit last Monday (missing my 2nd to last day of class, and the day before my Micro Lab Final)...but all turned out ok, just a major 24 hour stomach bug...the worst I've ever had in my entire life. It's definitely going around down here and I'm guessing I caught it at class from someone. It's amazing at how good I felt, then all of a sudden BAM!!

Off to get some rest before another day of babysitting (it helps that they are great kids).

I hope everyone has had a great week. Our public schools start back next week....so for those of you with kids starting school next week, enjoy your last school-free weekend :)

Transplant Clinic Report

I had a transplant clinic appointment this past Wednesday. Overall it went pretty good. My lungs sounded good, lab values good, and PFT's about the same.

The Lisinopril seems to be working pretty well for my blood pressure. I am still monitoring it and may be stopping a medicine soon to see if it might be causing the high blood pressure. The Lisinopril is also known to cause high potassium levels (hyperkalemia); My level was normal at clinic Wednesday, but higher than it usually is. So I will get my levels re-checked sometime next week.

I have been feeling run down and have had a cough and tightness in my chest, lack of energy and shortness of breath. I am finishing up my last week of TOBI and really didn't feel like the TOBI was helping get rid of this infection/cold at all. So my doctor put me on 2 weeks of Cipro.

I'm having to be extra cautious and really proactive with my health right now, since I'm starting nursing school. I really want to be able to go through the entire program without getting pneumonia or having to be hospitalized for any reason. Since my transplant 6 years ago, I've never gone an entire year without pneumonia or bad lung infections that have required IV antibiotics. While I can do home IV's, I usually have to be admitted for at least 1 week to get a boost on feeling better. So this will be a big adjustment for my body, but praying that it will cooperate! I really have had a good run since January's pneumonia hospitalization this year.

I am going to make sure I get the pneumonia vaccine at my next clinic appointment.(I've never had one, but the transplant team puts it on our list of things to get, but it's never been mentioned to me). I still have a few more vaccines to get that are required for nursing school.

Please continue to keep me/my health in your prayers! Also, my hands seem to be shaking worse, despite being on the medicine that is supposed to help/take it away. It may be due to stress, back pain, etc. But I really need steady hands for nursing school, and don't want this to be a hindrance during labs and clinicals.

Friday News

I am headed to the lake tonight for hopefully a nice and relaxing weekend. I was wrong about not getting a day off from classes for the 4th holiday. I thought our professor had July 5th on our syllabus, but he didn't, and he verified in class on Wednesday, that Monday is indeed a university wide holiday...YAY. So that means an extra day at the lake. Of course I have to take studying stuff with me. I've been spending the majority of my time studying Microbiology, that I haven't had time to do much for my online Developmental Psychology course. And I didn't do too hot on the last exam. So I will be catching up in this course at the lake. We have an exam due by Wednesday, a project due next Sunday, and a few other assignments. The professor uploads her lectures to the course website (since it is an online course). That is the only thing I don't like. Most of the lectures are 1 1/2 hrs to 2 hrs long and it is very hard for me to sit in front of my computer and listen to them. And then she adds all these extra videos for each unit, that in total, are at least an hour long. It is a lot of stuff, but I have to do better on this next exam, because I really want an "A" in this course.

For those of you who don't follow me on facebook, this past Monday, I got some wonderful news. I was selected to receive a full nursing school scholarship. I was 1 of 2 people and it is the best and highest scholarship the School of Nursing gives out. I was so happy, excited, shocked, etc. Totally unexpected. I was pretty sure that I would get some sort of scholarship, because the School of Nursing gives out a lot of money. I knew I had the GPA, resume, good essay, good recommendation letters, etc. But I also knew it was very competitive and we were told that probably 75% of this class met the requirements to apply for a scholarship. We had our 1st Nursing orientation session last Friday. We were told that they had extended the scholarship deadline and we would not find out if we were selected to get a scholarship until the 2nd week of August. Classes start the 3rd week, so as you can imagine, not too many people were happy about that. The particular scholarship that I'm being awarded requires the school to notify the recipients by June 30th. So that is why I found out sooner.

It is such a blessing and such an honor. I'm so thankful and really give God all the glory for this. Our family has been in some really tough financial situations lately. If there was not going to be scholarship money awarded, we were definitely going to have to take out loans. The scholarship may not cover all other expenses, and it does not cover the summer semester next year. But other than that, it funds the entire program and there are no requirements to keep the scholarship (such as GPA, etc.). This is such a blessing and took a huge burden off of my family and myself's shoulders. I had been applying for other scholarships (such as Solvay CF one, Boomer Esiason Transplant Grant, etc.) but had not heard back anything.

This summer is going by so fast, and before I know or realize it, I will be starting nursing school. YAY! Classes will be over the last week of July, with my last exam the 1st week of August. I'm hoping to fit some sort of mini vacation during my 2 week break before fall classes start.

I am babysitting tomorrow and next Friday. Then the next Friday, the 16th, I am taking the required CPR course for nursing school. So since I have classes 4 days a week, these next few weeks are going to be busy busy!

We had a really good CFF Young Professionals Board Meeting this past Tuesday. We are really excited to get this group up and going for our chapter. We have tried in the past, but the right people were not in the right place at that time. We are confident that the members on this board are very passionate about CF and really want to help find a cure. I was elected Secretary of the group, since I love taking notes, organizing, etc.

I hope everyone has a safe and fun holiday weekend!!!