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.

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.

BOMBARDED!!!

You think things are going well....but then they just go backwards. I have been having migraine headaches for about 8 days now (since last Monday evening). I had been unable to identify the underlying cause, and nothing was really relieving the pain. I'm not one to get headaches period, so to have migraines is a pretty big deal....especially when unresponsive to Advil, Tylenol, Excedrin Migraine, etc. So I finally called my transplant coordinator who had a call into the doc to call me in a specific drug to treat migraine headaches. While waiting for her to call me back, My mom asked me to check my oxygen saturation....which i feel kind of dumb to have not thought of that myself, considering I did that all the time before my transplant. After transplant, you tend to not check those things as frequently, and I don't normally have issues with my O2 sats anyway.

So when I checked them they were in the 80s (87-88%). Crap! So I called my coordinator back and she had me come to clinic today. After checking my O2 sats yesterday, i started putting some pieces together. First of all, I have been extremely fatigued/tired...probably 90% worse than normal. Last week I did start coughing junk up, but it subsided with the initiation of TOBI and Xopenex aerosol. I just haven't felt great the last week or so, but didn't really think anything about it. This morning before I left my house, my oxygen saturation was 88%.

So the verdict from clinic today: No pneumonia (which is good)..probably bronchitis or other respiratory infection. My lungs actually sounded ok. My PFTs, however, dropped 15% from 3 weeks ago (today it was 34/32%, compared to the first of February being around 49%). My oxygen saturation was initially 94% when checked. However, my coordinator had one of the nurses "walk me" around clinic and monitor my sats while doing so. They ranged between 88-89%. So based on my signs/symptoms, oxygen levels and PFTs.....this is what my doc prescribed:

Oxygen 2 liters at night (during the day if I feel like I need it)
IV antibiotics (home version)
Steroid boost
Finish round of inhaled TOBI

So not exactly happy with the outcome, considering I haven't had the best record of staying well the last 6 months. This is the 3rd round of IV abx since October..plus the GI hospital stay. And...I haven't had to use oxygen really since my transplant (with the exception of temporarily during 2 hospital stays with pneumonia). Doc said the oxygen should be temporary. I'll go back to clinic in 1 month to be re-evaluated.

So...with all said, hopefully these "scripts" will knock this infection out for good. Psych clinicals start next week....tests galore...crazy!!! Busy week this week with other stuff too....what the heck...every week is busy...LOL!

I did manage to get a B on my Pharmacology test last week...however, after studying for 2 straight weeks, I had high hopes of making a "high B" or better yet an "A." Maybe next exam.

Speaking of transplant, this Friday, February 25th, I will be celebrating God's wonderful gift given to me 7 years ago....the 2nd chance at life. 
 

Christmas Vacation

I can't believe I've already been off from school for 2 weeks. I only have 2 more weeks to go...yikes. Somewhere in the amidst of chaos, I agreed to work last week and this week. Same place I've worked the last 3 Fall semesters. They needed help....i love the place, people, and i could use a little extra $$. So today was my last day. I plan on sleeping a LOT, and resting as much as possible the rest of this week and next week. It's really hard to rest over the Christmas Holidays. I do have a few errands to run and meeting a friend for lunch on Thursday.

My last dose of IV antibiotics is tomorrow morning...yay! I actually don't feel tons better, but for right now...we are just going with the flow. I need some days where I've really rested and allowed my body to recover. So I'll readdress that after Christmas. I'm ready to de-access my port...driving me crazy :)

Grades for the semester were posted yesterday....2 A's and a B..yay!
My brother graduated successfully last Monday, the 13th. I'm so proud of him :)

And that's really all the news I have. Nothing too important. I have some pics i want to post in the next few days. Sorry :) I hope everyone is ready for Christmas and has finished all their shopping...LOL!!!!

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!

Home, Sweet, Home

I'm home!! I'll be doing IV antibiotics until Tuesday or Wednesday. I'm off to bed. Busy day tomorrow...then rest over the weekend (along with studying and school work).

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

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

Easter Update

I'm finally posting a much overdue update!! This has been a crazy and stressful week! I had 2 major exams (1 in Physiology Lecture and the other in my Nutrition Class). After studying almost non-stop the majority of last week and weekend and every day and night this week until Thursday morning....I'm finally taking a day off! I never knew how much studying could exhaust you! Many late nights...too much information to learn. I didn't do as well on my Nutrition Exam as I wanted. The physiology lecture exam wasn't as bad as I expected. I won't know my grade until Tuesday! I'm really praying for a "B", but not completely sure! It is nearing the end of the semester....and it has definitely gone by extremely fast!

I submit my nursing school application in 2 weeks. And I have a lot to do on that! I need to edit my resume. Our university has an online option where you can submit your resume to the career services center and they will critique it for you. That have specific people that know how a nursing resume needs to look and say. So I plan on submitting it to them by Wednesday of this coming week. I also have to write a 1 page essay on why I think I would be a good nurse and why the School of Nursing should accept me. I would really appreciate the prayers these next few weeks as I prepare my application, and then more importantly, that I will be accepted.

On to news other than school.....I've been doing a lot of stuff with our local CF Foundation. I have a more detailed post with this, as I don't want to make this post too long that you won't want to read it! Basically, I've been doing a LOT of speeches and have been really involved in our CF Great Strides Walks that start this month!

Tomorrow I plan on attending church for Easter Sunday. I'm really excited, especially since I have not yet been able to get back to church and Sunday school due to school/studying and/or needing to sleep. We will be having Easter lunch at my Aunt's house tomorrow afternoon. I'm definitely looking forward to that and spending time with family! Last year, I had an extremely bad case of Vertigo, and had to miss out on Easter lunch and the entire weekend in general!

Unfortunately, after Easter activities tomorrow, I will be back into studying and doing school work. I have a online quiz due Monday. I have to listen to an online lecture in order to well on the quiz. I also have a Physiology Lab Quiz on Thursday, which I will need to begin studying for!

That is really all I have to update on! I'm extremely blessed to be celebrating Easter and are truly thankful to Jesus for dying on the cross and rising again! I received my transplant 6 years ago on Ash Wednesday (which that year was February 24th). I never knew that until my wonderful CF doctor pointed that out. Easter is a wonderful season for miracles. And I'm praying that some of you awaiting that miracle of new lungs, gets a wonderful gift SOON!

Brief Health Update: overall I'm still feeling ok. The stress from school the last week or two hasn't been the best, as I've been extra tired. I am coughing a little and are having some chest pain. I can start the TOBI inhaled antibiotic this coming Monday. So I plan on starting it at least sometime next week, and hopefully that will keep any infections at brew away! I will probably go to transplant clinic the 2nd to last week or the last week in April, depending on how I am feeling. My back is hanging in there too. I have my bad days and my good! My shaking is out of control, and I have asked to reschedule the neurology appointment.

I hope everyone has a blessed Easter and a great weekend.

Weekend Wrap-Up

Once again, here is an update post from the last week or so. I promise I will get back into frequent posts, it has just been a little crazy, especially with school.

A lot of my "free time" has been spent studying. I had two more exams last week. My next exams are in about 3 weeks. I also have a project due in 2 weeks for my Nutrition course.

An update on my health: things have been pretty stable lately. The only thing really bothering me is energy level and just being really tired. I'm hoping to get back into exercising soon, now that my back pain has subsided some. I finish my TOBI inhaled antibiotic on Monday. I will give myself probably a week or so to see how I feel before approaching the subject of starting inhaled Colistin. I am hoping some of my lab values have returned to normal from the last clinic appointment back on February 10th. My transplant coordinator has not made me come back to get them recheck. She is just going based on my symptoms. I will probably go to clinic for a follow up appointment in April, if all goes well the remainder of this month.

In about 2 weeks, my 2nd most busiest time of the year will begin. April and May are always insanely busy. One reason is because I'm taking classes again. Also, we have all of our CF Great Strides Walks within those 2 months as well. And I always try to volunteer at as many as possible. I also have 1 wedding in March in Louisiana, and another one for a cousin here in April. Then there are several birthday parties, Easter, bridal tea, etc. Also, I am continuing to speak for the UAB Benevolent Fund, which coordinates and controls which charity organizations UAB supports. I spoke the last week in February. I'm speaking again this coming Tuesday, then again on the 24th and 30th of March .

I have also had a few babysitting jobs recently, and have a few more coming up. I hope those continue, as its my only source of income :)

I'm still finalizing a few decorations in my room. I changed out my light switch plate on the wall. It was the basic bright white standard plate. I bought a bronze metal finish one at Target yesterday. It matches my decorative accents in my room as well as the wall color better than the stark white.

I'm hoping to get my curtains (Valences) up tomorrow as well, but I need my Mom's help on that one. I also bought a decorative ottoman-like stool for the end of my bed. I wanted something to put there that I could use to set clothes out one, etc. In my former room upstairs, I used my big, nice chair for stuff like that. But now my chair is out in the den, because there wasn't enough room in the bedroom. I love this stool...it matches my room perfectly (especially my wall art above my bed). I wanted two of them, but HomeGoods only had 1. I've been checking back frequently to see if any more come in stock. One of the ladies that work there said they should get some more in...so I'm really hoping they do. The company that makes this particular decorative furnishing is only a wholesale businesses and I can't find any online stores that carry their products. We only have 2 HomeGoods stores in Alabama. So if any of you ever see a duplicate to this...let me know :) I really want a 2nd one!!

The design matches my wall art almost perfectly!!!! And the material of the stool is suede-like just like my comforter on my bed!!!

If any of my blog followers are local and are not participating in a CF Great Strides Walk currently, I highly encourage you to do so! You can click on the Great Strides Widget at the top right of this blog for a link to my personal team. Or you can send me an email! SUPPORT CF!!

I think that is about it...not much to report.

TOBI Resources on Facebook

Novarits Pharmaceuticals has created a resource page on Facebook, for TOBI. You can click here to visit the Facebook page and become a Fan!

TOBI (Tobramycin Inhalation Solution, USP) is a prescription inhaled medication for cystic fibrosis patients whose lungs contain bacteria called Pseudomonas aeruginosa. TOBI has not been studied in patients under 6 years of age, in those with a lung function outside of a certain range, or in those whose lungs contain bacteria called Burkholderia cepacia. Ask your doctor if TOBI is right for you.

Have you heard about the TOBI Co-Pay Program? Pay only a $10 co-pay for TOBI. Call 1-877-999-TOBI (8624) to confirm eligibility and enroll.

• How should TOBI be stored?


• How should TOBI be incorporated into a treatment routine?


• What's the difference between TOBI and compounded IV solutions of tobramycin used for inhalation?

Find the answers to these questions and other FAQs here, or visit the Tobi official website by visiting here.

There are a lot of us CF Bloggers (pre and post transplant) that currently use TOBI. It is one of the very few drugs that can treat the pseudomonas infections quite well.

Aztreonam Approved!!!!

I know several of you actually participated in studies of this drug. I actually was in the study as well, but discontinued it due to side effects. However, on Monday, the FDA approved an important new inhaled antibiotic called Cayston® (aztreonam for inhalation solution) for the treatment of CF. The drug was made possible by significant support from the Cystic Fibrosis Foundation, including an early $1 million investment to help develop the therapy. The approval of Cayston demonstrates that our drug development model, fueled by donors and volunteers like you, is working and making a real difference in the lives of people with cystic fibrosis.

Developed by Gilead Sciences, Inc., Cayston offers a much-needed antibiotic alternative for CF patients who battle recurrent lung infections and develop resistance to existing antibiotics. Cayston is used in a 1 month on, 1 month off cycle, similar to TOBI. Cayston is administered with a new device called Altera that allows patients to take the medicine in less than five minutes, a fraction of the time required for other inhaled antibiotics. This shortened delivery time reduces the burden on patients, who -- on average -- have a treatment regimen of three to four hours per day.

“The Cystic Fibrosis Foundation’s early funding and ongoing support for Cayston played an important role in bringing this new therapy to patients,” said Bruce Montgomery, M.D., senior vice president, head of Respiratory Therapeutics, Gilead Sciences. “We are thrilled to help meet an urgent medical need for CF patients, and to support the Foundation’s mission to improve the lives of people with this terrible disease.”

Cayston will be available by the end of next week. Patients interested in learning more about Cayston should consult their physicians. You can also visit their website for more information. Also, attached here is an official drug information sheet for patients.

The Cayston Access Program assists with reimbursement and access to Cayston. The Cayston Access Program reimbursement specialists can answer questions related to insurance coverage, financial assistance, specialty pharmacy referral, and claims appeal support. Attached here is a brochure with more reimbursement information.

Lack of Posting/Misc Update

Sorry for the lack of blog posting this past few weeks. Things have been crazy...school is crazy and if I have any free time, I'm trying to spend it studying. I have a huge physiology lecture quiz due tomorrow, an exam next week that I really need to do well on, and several other things for my other 2 classes.

A quick health update: the TOBI has seemed to work pretty well in keeping this pseudo sinus & lung infection under control. I haven't felt any worse since my clinic appointment last week. However, I finish my oral Cipro tomorrow (which I was on for the sinus pseudo infection). I still have 2 weeks left of the TOBI, so I'm praying the infection will clear up even more. I still don't feel 100%, and could really use some additional energy.

My back is still very extreme/sever pain, and it's getting really frustrating. It has prevented me from attending some classes, and overall being able to do a whole lot. Driving irritates it, so I've been limiting my driving. I'm not sleeping well, because i can only lay on one side without being in too much pain. I had missed my physical therapy appointments last week, but got back in yesterday. I'm hoping those visits will help. I'm taking so much pain meds, it's crazy...and when I get in a lot of pain, it makes me feel like crap. I have a HUGE pain tolerance, so when my pain level is over 10...it's bad. And today it's bad. I would love some relief.

I had the opportunity to speak to a group of people about CF on Wednesday. It was a committee that is in charge of deciding which organizations to support for the University of Alabama at Birmingham. They have been supporters of CF for awhile, and wanted one of the "agencies" they support to come talk at their meetings. So the council president invited the CF (in particular me) to come speak. They had written an article about CF/our local CFF/and myself for their newsletter publication. So their 1st meeting, which consisted of the council/committee members was Wednesday. There were probably about 25-30 people. I talked for about 10 minutes and according to other people, the speech went exceptionally well. Some of the members asked questions at the end...which I love. To me, asking questions, indicates they really paid attention to what I said and are really interested in Cystic Fibrosis.

I will speak at 3 more of their meetings in March, in which employees are invited to come and see what agencies the Committee supports and how they are involved in the community. I'm really excited about those meetings as well, as it will be employees showing interest in what this committee does, which in turn means interest in Cystic Fibrosis.

My brother's birthday is tomorrow, and he is coming home this weekend to celebrate. Other than that, I plan on resting this weekend and studying like crazy.

Oh..and I did not attend my Neurology appointment last week (which was for my intense hand/body shaking) due to the weather (snow). I have not rescheduled it yet, and may be delaying it somewhat.

I hope everyone's week is going well. Just one more day until the weekend :) I will try my best to post updates more frequently. Next Thursday, I will celebrate my 6th Transplant Anniversary. God has been so great, and I feel so blessed to be here, alive today, and able to pursue my dreams.

Clinic Results

I mean to post this update yesterday, but got busy! I had my follow-up transplant clinic appointment Wednesday from when I was in the hospital recently. Unfortunately, it didn't go quite as I expected....wasn't horrible, but not good either.

My PFT's were slightly lower than the visit in December, but higher compared to September/ last Fall. My FVC was 1.58/47% and FEV1 was 0.99/37%. I usually don't have that big of a gap between the two numbers...so I was a little surprised. My midflow (FEF 25-75%) was 0.33 or 10%. Performing the tests today definitely stirred me up....evidently I've got a lot of junk inside (sorry, probably TMI).

In December, my FVC was 1.49/44% and my FEV1 was 1.10/40%. My midflow/FEF 25-75% was 1.05/31%. In November, my FVC was 38% and FEV1 34%. In September, my FVC was 35% and FEV1 33%. So today's #'s were better than September and November of last year. They weren't really concerned and neither was I. And plus, my PFT's don't always accurately reflect the way I'm feeling.

My WBC count was really high @ 15 something. Mine usually runs around 3 or 4...so definitely indicative of an infection. I haven't had a WBC count that high in probably 2 years. But the weird thing is, my WBC count with this last pneumonia was only 8 something...which is still pretty elevated for me. So we were all definitely shocked to see this number. I don't think I'm contagious in that aspect since I've been on antibiotics. However, I'm going to pay extra attention to those around me that might have colds, the sniffles, etc., right now.

I'm really frustrated and "tired" of being sick and not being able to knock out this dang infection. I knew I had pseudomonas growing in my sinuses from my ENT visit (and more than likely in my lungs again), but didn't expect it to be that bad. My xray looked ok, about the same as it was in December, and much clearer than with this past pneumonia. I am very dehydrated as well...which I had a feeling I would be because I've been thirsty like crazy. Also, in the lab this morning, it took them 5 sticks to get blood...UGH. They said my veins were dehydrated. Of course I'm not sure exactly how much of the dehydration caused the difficulty verses the skills of the lab technicians. One tech did get a vein, but I didn't have any pressure/blood flow to get into the lab tubes--weird.

I have completed 2 weeks of Cipro and about 1 week of inhaled TOBI. We (my doc and I) are hoping the TOBI as well as the final week (week 3) of the oral Cipro will help clear this infection up. I also did another sputum culture to check sensitivities, since we are now dealing with a lung infection and not just sinuses. I didn't realize you could have different sensitivities in the lungs verses the sinuses. If I haven't improved much in the next week, then my doc said we would probably have to do IV antibiotics...which STINKS that this is happening again so quick. Hopefully though, if that is necessary, we will be able to arrange home IV antibiotics. That will allow me to still attend classes. I definitely don't feel as bad as I did with this last pneumonia... I'm not as SOB and are not running any fevers. So as long as I don't feel worse, the home IV's will work (of course this is only if the TOBI doesn't kick in). So we'll see what happens over the next week. If you feel led, please pray that this infection resolves quickly, and that it won't interfere or put me behind in my classes again.

My doctor that I saw today did mention that it seems like these infections are brewing when I'm on my "off month" of the TOBI or not on any kind of oral antibiotic. He suggested alternating the inhaled TOBI with inhaled Colistin. I'm not too thrilled, as I don't want to be on antibiotics 24/7. But I guess if that is what it takes to keep me out of the hospital this semester, then I will do it. I haven't used the Colistin since before my transplant....so I'll be interested to see how it works.

My weight was up 5 pounds from December, which is really good, considering I had lost about 10 pounds with the gallbladder issues/surgery (which is a lot for someone my size). I'm very happy that the weight is starting to come back on :)

My back pain is doing better...still there and extremely painful at times...but definitely getting better. I've had to cancel my 2 therapy appointments this week due to a school exam and today due to not feeling well. I'm really going to try to be pro-active and stay well (which may include missing some classes if it is really cold weather outside). We are supposed to have possible SNOW (not just flurries) on Friday. I'm anxious to see if the weather people are right this time :)

At last but not least, I have a neurology appointment on Friday morning to evaluate the extensive shaking I'm having. I thought it was much better, but has been worse the last few days. Although I'm mostly noticing it in my hands verses my entire body like it had been doing awhile back. I'm sure this will be an interesting appointment...not looking forward to answering a million questions :)

Ok...so a long post...sorry. I hope everyone has a great Thursday...almost the weekend.

Wrap-Up Wednesday

Ok...so my promise of blogging more obviously didn't happen last week nor this week. It has been SO SO crazy, I just haven't had time to blog. In addition, my computer got a virus the end of last week. So I had to take it to get it removed and just got it back and set up in my new room yesterday. So today, Wednesday, I'm going to do another "catch-up" post. BEWARE: LONG POST (but I do hope you will read it)

I have officially moved downstairs...YAY! I really love having my own space. I was going to post some pics of my scrapbooking area, but my computer is not cooperating right now. So I promise I will post those later this week, hopefully sooner than later. Sorry! I finally have all (or most) of my scrapbooking stuff organized. Now I can finally start scrapbooking (I'm so far behind).

My bedroom is complete, with the exception of my wall art, decorations, etc. I had to buy a new desk because the one that I had in my "old room" was too long. In addition, it was really heavy and bulky, and we were not sure we could get it out of the hall and down the stairs without disassembling it. So my Mom is going to use that desk. I also bought some cute valances for my windows, and are hoping to put those up this weekend as well (I didn't have curtains in my old room). The valences are "suede/velvet-like" which exactly matches my comforter. The colors are exact too...and even more exciting was that they were on clearance at Target!!

Ok...so a few more things just to catch you up on.......

Thank you to those who left comments on my blog regarding Emily Mulkey's passing. It's been tough...but ok. For those of you who would like to write a response to Emily's Memorial Service, a letter to Faith, Jason or another family member, or simply express how Emily's life has affected you, changed you, encouraged you, or inspired you (whether you knew her or not), you are welcome to comment on her blog (specifically by clicking here). These will be printed and bound for the family.

Ok...onto another subject. I had a visit with my ENT last week....only to find out my sinuses looked really good. I was a little confused, as my transplant team as well as myself thought my sinuses were the culprit of this last admission with pneumonia. It may very well have been, but no one knows for sure. My ENT did a culture just to make sure everything was ok. And about 1 week later, the nurse called me to say that my culture grew out moderate pseudomonas. So I am back on Cipro oral antibiotic for 3 weeks...yay! My body is tired of antibiotics...needs a break. But I could tell I was very junky...so I'm glad he did a culture. I started doing an occasional Xopenex inhaled neb treatment to help get the junk out. I also start my inhaled TOBI this weekend. I'm trying to stay well and OUT of the hospital.

School is going ok....I bombed my 1st physiology lecture exam this week...yikes. I knew I wasn't 100% prepared. It's been hard coming in 3 weeks into the semester...still have some catching up to do. I'm praying I can bring my grade up. I have my 1st physiology lab exam tomorrow (Thursday). I also have a nutrition class exam next week as well as a project due.

Tomorrow (Thursday) is going to be a very busy day. It is my 25th BIRTHDAY. I have my 3 usual classes, including my physio lab exam. I also have a nursing school application session where I will be informed of everything I need to apply to nursing school. I'm excited about that!

One more thing...I have been experiencing some severe lower back/hip-area pain. It is really bothersome and really painful. Please pray that this resolves quickly, as it is interfering with going to classes, driving, sleeping, etc. I am attending physical therapy like I have been, and doing some other things to try and relieve the pain. Thanks!

I think that about wraps everything up! Sorry for the long post....I'm going to do my best to update and blog more frequently!

Going Home

I'm finally escaping Club Med tomorrow (Wed) after 14 very long and rough days. I do feel a lot better and are ready to get back into my daily routine. I'm still very tired and weak. It will take me awhile to recover from that. This infection really knocked me down, and it's going to take some time to get back to my usual self. I have a lot of weight gaining to do as well. I've lost so much weight between the gallbladder surgery and being sick. I'm "sick and tired" of being sick and didn't like starting off the new year in the hospital. Hopefully I will remain healthy and feeling good for a very LONG while before getting sick again.

I was really frustrated that I was not able to get out on home IV antibiotics so I could attend classes today. The doctor wanted me to stay the full 14 days. I will return to transplant clinic in 2 weeks, unless I need to go before. My transplant coordinator made it clear that I really need to rest and take it easy as much as possible at home. My plan right now is to attend my physiology lecture class Thursday afternoon. And then the following Tuesday, begin attending all 3 classes. I'm looking forward to resting and just being at home this weekend AND sleeping in my own bed.

My stomach is continuing to misbehave. I do feel like the distention is some better, and some of the nurses agree as well. I've had a Lortab for pain tonight and trying to tolerate it without any other pain meds. They really don't want to give me any, which I understand. And once I'm home, I won't be able to get the good, strong, narcotic IV Dilaudid. So hopefully tonight will be a good night. I've been pretty nauseous today and yesterday, so I'm taking the phenegren pretty regularly. Thankfully, I have phenegren at home I can take. The docs still feel like the cause of this is due to all of the antibiotics I've been on the last month or so (a whole lot). So I'm expecting the stomach distension and pain to resolve once the antibiotics get out of my system.

The pneumonia has cleared up on the xray. My heart rate is still pretty high (150 with exertion, walking, etc.). It is a little better at rest, hanging around 100. I know that will get better once I'm moving around more. Thank you to all of you for your prayers and good thoughts these last few weeks. I will update tomorrow when I get home or sometime soon thereafter. I hope everyone is having a great week.

P.S. I did have pneumonia this admission, and it was showing up on xray. I'm not sure why I wasn't notified of that upon admission and could have sworn that he said my xray was fine. But evidently it did show some lower lobe pneumonia. The bacteria causing the pneumonia was Pseudomonas.

Quick Sunday Update

This a brief post, but wanted to post an update like I promised.

Once again, the lungs are good and keep getting better. My energy is pretty good as well. I am still off the oxygen, and finally getting some breathing relief. The stomach is still giving me major problems. I went through so many narcotic pain meds last night, it was insane. I was in tears for several hours (and I have a HUGE HUGE pain tolerance). I finally got some relief at 2am with a dose o Dilaudid (spelling..sorry). This was after 2 does of Morhpine, oral Ultram, and IV Toradol. The Toradol took a minimal amount of pain off, but not near enough. They wanted me to try that 1st since it easier on the stomach. The Dilaudid worked like a charm, and I was finally able to get some rest. The nurses are in awe and very shocked when they see my stomach get as distended as it's been doing each night. There is still no answer...and FINALLY, my doc ordered a GI consult for tomorrow (Monday), as well as an Abdominal ultrasound and xray, in which I had performed today. I think the ultrasound may have shown some things, as she brought up the fluid that I have had around the area, and she was clicking away on pictures of my abdomen.

The same pattern presented itself today. Tummy was fine this morning and mid-day. It gradually started getting distended, and by 7pm or so, I was in extreme pain again. I got a dose of Dilaudid, and hoping i knocks the pain out for good (at least for tonight). I will update tomorrow, with hopefully some answers.

My new goal is to be discharged Tuesday morning where I can still attend my Physiology Lab Class that night. Keeping my fingers crossed.

Saturday Update

Once again, sorry for no update until now. The computer I was using sorta crashed, and I was unable to use it at all. I am borrowing Brandi's computer, and very thankful she is allowing me to borrow it. Thanks girl! Brandi just got admitted Friday, so if you haven't visited her blog yet, go ahead and let her know you are thinking and praying for her.

As for me...the lungs are doing good...much better. I am now completely off oxygen. Last night was my 2nd night off the O2, and my oxygen saturations seems to be holding ok. I've definitely got a little bit more energy and definitely feel better. I'm not completely better...but definitely on the road. My goal is to still go home Monday on home IV's, so I can attend classes on Tuesday. We will see!

I ended up getting a unit of blood yesterday (Friday). My HCT dropped 3 more points from Thursday, down to 19. So that gave me a little more energy as well.

As far as my tummy....it really sucks. It has not gotten any better, and last night was probably the worst night. It descended majorly...looking like I was pregnant with triplets. It really was uncomfortable and the morphine was helping much. I managed to tolerate it after 2 rounds of IV morphine and finally fall asleep. Of course this morning is was better. It has started to distend as of now (4pm CST), and I'm not sure what will happen. Several people (nurses, docs, etc.) were really pushing me to get an NG tube to get the air out. I've been really trying to avoid it. I can handle anything else accept for NG tubes, and was seriously traumatized by them after transplant with my bowel obstruction. I talked with my doctor this morning and he said it was entirely up to me. And he wasn't 100% sure it would cure the problem either. He said we could watch it today and see what it does. He is more than willing to give me some more pain medicine to see if that helps. And if it doesn't, he will probably order an ultrasound. The xray only shows air/gas, and I'm doing everything humanly possible to resolve it. I hate this and it's more frustrating that we don't know what is causing it to build up in my stomach. We know it's not an obstruction, because everything is functioning in that area. He has cut back on one of my oral antibiotics: Azithromycin. I usually take this M, W, and Fridays, but the doc who admitted me changed it to every day. So my doc now is changing it back to M, W, Fridays like normal. Please pray that this issue will resolve itself ASAP and it won't affect me going home. I'm still sick and not over this infection/pneumonia, but feel good enough to resume treatment at home, so I can keep up with classes.

The only other issue is my sinuses. I am still congested in my head and cannot hear out of my right ear at all. And none of this has resolved since admission. Usually the IV antibiotics help with that. So I'm not sure what we will do about this. Because a lot of the times, my sinuses are the cause of the lung infections.

I hope everyone is having a good weekend. I will update again tomorrow. Oh...and ROLL TIDE!! BAMA IS #1

Wednesday morning update

Sorry for not updating again until today. Monday was a really good day. However, yesterday was not. I spent the entire day, literally, throwing up due to a new medicine they had started. Feeling sick and throwing up made my heart rate stay high and I constantly felt like I was out of breath. Therefore, I was on oxygen all day yesterday. I am feeling much better today, and praying things will finally start going in the right direction.

Evidently, I'm only sensitive to very few antibiotics right now that will treat this infection/acute pneumonia. The cefipeme, that I was getting, was not one of the sensitive medicines. There was only one 100% antibiotic that was sensitive to my bug, and that was Meropenem. Well, evidently it is in the same class at Zosyn (which I'm allergic to), so it really made me sick. Consequently, I didn't eat anything all day. The docs removed the Meropenem and switched to Ceftaz. It is only intermediate sensitivity, but hopefully with the Vanc and Tobra it will be ok. However,now, it's basically like starting over with a new antibiotic.

I did have some visitors Monday, and may have a few today. I'm definitely ready to get out of here, but my body is definitely just now beginning to fight this infection. And plus, I don't have oxygen at home, and don't want to have to use it at home either.

I am missing my 1st day of classes tomorrow, which really sucks...I'm so mad. But I can't do anything about it, unfortunately.

Please pray that things will only continue to move FORWARD and not backwards. I hope everyone is having a good week. I promise I will update more frequently.