Artwork

Over the last couple of years, I've been "redoing" my room! We painted a little over a year ago. And I updated some of my furniture, including a new bedspread/comforter! I love the modern style. And I love chocolate brown, rustic colors, greens, etc. I had been looking for the "perfect" artwork piece(s) to go above my bed. I really hadn't found anything that I absolutely loved until the other day. And finally, my mom and I put it on the wall Sunday night! I really love it and thought I would share a picture with you!! The coating on the outside is actually sort of shiny (but is hard to tell in the pictures). I sort-of made up my bed, so you could see how it looks with my comforter. I do have a few green accents in my room (that is my accent color) in addition to the chocolate brown and tan/light wood-like colors). I did not have my pillow shams on my bed...sorry!

Music Monday

Finally...Music Monday! This song, "In Christ Alone" is by the Newsboys! We sang this song in church yesterday! And yes...I finally made it to church AND Sunday school! And man was it good to be back! This an awesome song and I LOVE singing it! The lyrics really speak the truth! Christ is my strength, my comforter, my all in all! Sin's curse has lost it's grip on me because of Jesus Christ! The wrath of God was fulfilled that day Jesus died on the cross. And because of that, we have the power of Christ within us. We fear no death, nor guilt. Our faith rests in Him and in Christ alone, I stand firm! God commands my destiny, and nothing will take me away from Him until he calls me Home! Christ is the beginning and the end! ENJOY!!

Lake is a no go!

Well, we got down to our lake house, and the water wasn't working. We had been having some problems, but thought it was fixable, so we went ahead and went. But whatever my Mom thought she could do to fix it didn't work. So we had to drive back...UGH!! I haven't had any lake time yet this summer. So frustrating! My Dad is going down in the morning to look at it (he has a fishing tournament tonight, so couldn't do it today). I'm not sure if I'm going to drive back down or not. My knee/leg is still really hurting, and I don't want to waste anymore gas either. It's only about a 45 minute drive,but still. So it looks like I'll be home again! Hopefully it will get fixed, because I'm planning on being there Thursday-Tuesday for the 4th holiday!

Lake

I'm off to the lake in just a little while. I'm just staying through tomorrow. Coming back tomorrow night so I can go to church Sunday! Praying for nice weather!!! I will not be taking my computer, so I will update and catch up on everyone else's blogs when I return! I hope everyone has a great weekend!

Clinic Report

Today I had my follow-up transplant clinic appointment from being in the hospital. I'm happy to say that the appointment went really well! My PFT's were up (44/46)! This is actually the best they have been in a long time..so yay!! My chest xray had improved since the hospital as well! All my lab values were pretty good too: My WBC count was: 5.4 (due to the prednisone); Magnesium: 1.8; Creatnine: 1.0; HCT: 28 (low....but they won't do anything about that); and my BUN was 23 (which is much better). My 02 sats were 94%, which is ok, but not great. I'm still not happy with that number. But they were pleased with it for now. I'm sure they will get better!

I got the "ok" to go on my cruise. And I got clearance to attend the CFRI conference! He gave me a prescription for Cipro to take prior and/or during the cruise if I need it. Hopefully I won't need it, but I have it just in case, which is nice!!!!

I have restarted the Advair Inhaler back for my wheezing. So we will see if that helps. I have been wheezing the last few days. I am now also off my prednisone taper. My doctor wants me to get my wheezing under control before I start the inhaled TOBI antibiotic. He said that TOBI can actually cause broncho-spasms. And he doesn't want that to make my wheezing worse. So that's fine with me. We will follow up with that in a few weeks.

So overall, everything went extremely well. And as long as I am feeling ok, I can wait to return to clinic at my September appointment!!!

I also got permission to take some Motrin, Aleve, etc. for my knee pain. Hopefully that will help with the pain and the inflammation. We aren't allowed to take much of "ibuprofen" like drugs, post-transplant, because it is very risky for our kidneys. But my kidney function is really good right now, so he said I can take it for about 1 week. Hopefully it will heal QUICKLY so I can get back into exercising!!!

Changing subjects: Brandi and I reserved our hotel room today as well as our plane tickets! We are flying out that Wednesday prior to the conference and returning Sunday evening!! I'm excited!!!

CFRI Family Education Conference

Brandi brought to my attention last week that the CFRI (Cystic Fibrosis Research, Inc.) puts on a family education conference every year. This is their 22nd year to do this. I had no idea there was something out there like this for families, patients, etc. of CF patients. Brandi expressed interest in attending the event and asked if I was interested. After looking at the information and talking about it, we are pretty sure we are going to attend. Brandi got the "ok" to take a few days off of work. Now I'm pretty excited and psyched up about going! Neither one of us has been to San Francisco. I've been to Los Angeles and San Diego...and so far, I LOVE California!!

This year's conference is in San Fransisco....so yes, basically across the US for us two girls (AL-CA). It is July 31st through August 2nd. One of our local CF doctors is actually going and speaking at the event. I'm not sure if any of our CF team from the hospitals attend or not, but I'm definitely interested in finding out. The hotel looks awesome and is right on the Bay. It is just 10 minutes from the airport and has lots of amenities surrounding it. The conference begins Friday afternoon at 4pm and goes through Sunday about lunch time. However, we are going to fly out either Wednesday night or Thursday morning. YAY! The cost of registration (conference) includes all of your meals for the weekend, which is great!

Click here to find out more information about the conference. It is open to any caregiver of a CF patient, relatives of CF patients, medical professionals, etc. AND even adult CF patients. I'm curios if any of my fellow bloggers have ever attended this event, especially the adult CF patients. I know that a lot of the seminar will not pertain to me, but I'm excited about learning new things and bringing it back to the CFF. I'm also interested in current research and what is being done to help cure and advance the treatments for CF. There are also break-out/support groups that go along with your relationship to CF. (i.e: parent, adult CFer, siblings, etc.).

If you are an adult CF patient who wishes to attend, you do have to perform a sputum culture prior to the event to make sure you are not currently positive for certain bacteria. This is true for CF patients who have been transplanted as well.

Money is a little tight...but I'm really going to try and make this work. I think it is a great opportunity. Yes, it will be fun, but I'm also looking forward to the array of information I can bring back to other CF families and the CF Foundation. I go on my cruise the following week after this, so I definitely have to plan and save wisely! I really encourage you to check out the website and see if it interests you!

Father's Day/Weekend Wrap-Up

It's been a BUSY BUSY weekend!! I'm sad to see it go, but ready for a new week!
I stayed busy pretty much the entire week helping Mom with garage sale stuff!

Thursday night I did go to dinner and a movie with a friend. We saw the Night at the Museum 2 movie. It was really cute!

Friday night Brandi and I went to eat at the Melting Point. SO SO good!! I had a gift card and had really been wanting to go. I think we both agree the food was excellent. And the fondue dessert....to die for. I can still taste it in my mouth. So YUMMY!!!

Saturday we had a garage sale. The sale was pretty successful, but we could have done better. I made a good amount of money though, and I definitely think it was worth it for me and my parents. My grandmother and aunt had also contributed items. Nevertheless, garage sales are always exhausting and long days. We have a friend of ours that owns a thrift store, and all of the donations/items go towards missions (local and international). So after the garage sale was over, he came by with his big rental truck and pretty much took everything we had left over, which was very nice. We didn't have to fool with packing it back up and taking it to Goodwill, etc. I think my parents and I pretty much crashed the remainder of the day. After dinner, we went out and got some ice cream!!!

On a side note: Yesterday morning (Sat) I woke up with a lot of pain in my knee. It felt like i had pulled a tendon or ligament around the knee joint area. I don't remember doing anything to it or remember feeling any sort of muscle pull in the previous days. My mom said it was probably caused by going up and down the stairs so much this week. And my muscles/joints have been tight and weak due to being sick and being on the prednisone. So I'm not totally sure what happened. Nevertheless, I can't bend my leg/knee at all without being in excruciating pain...seriously. It hurts SO bad. Last night when I got into the bed, I could not get comfortable. I was crying it hurt so much. The only position I could put my leg in is was to bend the leg completely and keep it bent. I couldn't stretch it out. I ended up just getting out of bed and staying up pretty much the entire night. I finally took some prescription pain meds around 3am and it seemed to help a little bit. It feels a tad better this morning, but still really hurts. I mean...come on...seriously? Do I need this now???

My plan for today was to get up and go to church (since I haven't been in a LONG time due to being sick and other circumstances). Well, I wasn't going to be able to do church and Sunday School. So I was going to just do Sunday School. Well, I did get up, but by the time I got to the church parking lot, there was no available parking space that didn't involve walking a LOT (and we have a HUGE HUGE parking lot/church). The shuttle wasn't running because it was before the next service begun. By the time I got into my class, I would have been late, and I would have aggravated my knee even more....UGH!! So bummed!

So I'm at home typing this post now :) My parents are at church. As soon as they get out, we are going to go see my grandfather for a little while. Afterwards, I'm going to hang out with Brandi and a couple of her friends by the pool (yay!).

Tomorrow is my Dad's birthday. So we are going out to dinner tomorrow night to celebrate Father's Day and his birthday! I wish all the Father's out there a very blessed day today!! I know God has truly blessed me with an awesome Dad, and I couldn't ask for better!! I love him so much!

So...yea, I know, that was an extremely TOO long of a post! Sorry! I've got another busy week coming up! But I promise to keep updating!

Grilling Goodness!

It's Friday...which means it's time for another Grilling Goodness! Head on over to Tina's blog if you are interested in participating in this fun little Friday meme! Enjoy!!

1. What do you like most about your skin? Hmm...interesting. I guess I like that I have fairly dark skin...or rather, that I tan really easily and really dark during the warm months. And natural tanning...i don't go to a tanning bed. That's probably the best thing about my skin. I have so many stretch marks, scars, holes, etc. that my skin is definitely not the best looking :)

2. Does your spouse mind grocery shopping for you or with you? I'm not married. I hope though, that when I'm married, that my spouse will come along with me. I'm really hoping he will do the cooking too!

3. Do you have access to a pool for the summer? NO!!! I wish I did! I have access to the lake, but it's not the same. I have a few friends with a pool at their apartment/condo, so I'm hoping I might be able to use that some???? (hint)

4. Do you have plans for Father's Day? Not sure. I'm guessing we will go see my Dad's mom (my grandfather), who lives in a retirement/nursing home. We might take my Dad out for lunch...not sure of exact plans yet. My Dad's birthday is on Monday, so we may be doing a joint thing for him?

5. Is there anything that terrified you as a child that you find .... now? Not sure about terrify? I am definitely not a bug person...and still hate bugs to this day. If there is someone else around, then i will ask that person (even children) to come and kill the bug...not me...especially those big, nasty, flying cock roaches! I've had several bad experiences with cock roaches. I also have never liked the villains/monsters, evil people in Disney movies. I never liked watching them growing up, and would prefer not to watch them again today. I know that sounds weird and insane...but it's the truth (ex: Snow White, Little Mermaid, Sleeping Beauty, Beauty and the Beast, etc.) Obviously that wouldn't terrify me now, but still.

6. If you could do something instantly, what would it be? Right this very moment....get rid of this awful breakout all over my face, chest, neck, back and arms. I feel so embarrassed out in public....dang steroids!

7. What would you do to entertain visitors from out of town? Hmm...we don't have a lot of "fun" or "interesting" stuff to do around my local town. I would probably take them out to dinner. More than likely, maybe hang out and watch movies or just chit-chat. I guess it depends also on who the people are and what they want to do. And if there are kids with them? There is always shopping...we have some pretty good malls/outlets. Zoo for kids?? We do have one theme park that includes a water park. Which if it is during the summer, you pretty much need water if you want to do something outside. They could come hang out at our lake house...that would be fun, and definitely entertaining!

8. If your best friend owes you money, do you bug them until you get it? Not really. I might mention it or if we are out doing something, we will just swap out. I guess it depends on how much money too!

Steroids/School Update

I haven't really had much of anything exciting to blog about. I did get a pre-nursing advisor assigned to me on Tuesday. I will be contacting her to schedule an advising appointment REALLY soon! I also have been cleared to register for classes...HOWEVER, my "time-ticket" (which is when I can register) is not until August 1st...UGH!! I'm going to see if there is anyway possible I can register earlier than that. I'm VERY worried that the classes I need/want to take in August will be full by then. (in particular the sciences). With a couple of the sciences (Organic Chemistry, Microbiology), the university requires you to take a supplemental course IN ADDITION to the lecture and lab course...so yes, a total of 3 classes for 1 science...CRAZY!! And the best part...you don't get any credit hours for the supplemental course, but it is a co-requisite requirement! It better be for free :) So basically, for every 1 science course, I'm taking 3 classes. That is going to be hard to schedule...so that's why I don't want to wait until August to register for these classes! Other than that...everything is ready to go...I've been approved for everything! I'm still planning on working starting in August...so praying that the school and work schedule will work out together!

Ok...so the second part of this post...STEROIDS!!!!!!!!!!!!! Have I mentioned how much I HATE HATE taking steroids (ex: high-dose prednisone)????? Prior to transplant, I took Prednisone all the time. I don't remember the doses...probably around 20mg or so, maybe less. I rarely did Prednisone Bursts though and rarely had Solumedrol in the hospital. At 6 months post-transplant, I was put on my life-time maintenance dose of 5mg. I've been on 5mg for pretty much the entire 4.5 years. I think there was one time back in 2006 where I did a Prednisone Burst (for wheezing I think). But then it turned into pneumonia, and the steroids were discontinued. Last May, I had a moderate case of Acute rejection. I was given 1000mg of IV Solumedrol for a total of 3 days (and man, did it make you feel like hell! But it was only 3 days). If you have been reading my blog, then you know this last hospital stay, a lot of inflammation was found in my lungs. The cure for inflammation: STEROIDS! I completed very high doses of IV Solumedrol while in the hospital(starting out at 80mg via IV). Then I was sent home on High-dose Prednisone. I am on a taper, and will be back down to my 5mg next Wednesday, the 24th.

However, in the meantime...this Prednisone Burst has pretty much caused every side effect possible within my body. I hate it! And it has a lot of potential side effects. I sure do hope the benefits outweigh the risks/side-effects! Unfortunately, there is really not much you can do to reverse or help with the side effects, which makes it even harder. The two main side effects: A Break-out-like rash over my entire body, specifically face,neck,back,chest,arms. It's awful, and I'm even embarrassed to go out in public with my face. My coordinator said it "should" get better. Praying it hurries up...I can't stand it. And my face itches and burns too! The other major side effect: shakiness!!!! I can't even tell you how much it makes me shake. Currently, I can barely hold onto any utensils to eat food with. My mom is actually fixing my dinner plate at night, because I have ended up spilling food out of the pots and pans! I can't write (with a pen that is), without my writing looking like a 2 year old. I haven't been able to write my thank-you graduation notes because of this! My legs pretty much shake all day long, no matter what I'm doing. It's a little aggravating when you are trying to drive too. Other side effects: high blood sugars, headaches, no sleep, joint pain, female issues, etc. You'll be amazed at the possible side-effects. The crazy part is that it doesn't affect everyone this way. For the most part, it causes an appetite increase and maybe swelling. I guess I'm just special. OH how I long for this to be over!

So that's my rave on steroids!! I'm going to dinner and a movie tonight with a friend! And tomorrow night dinner again with Brandi at the Melting Pot (I have a gift card and are so excited)! My mom is having a garage sale Saturday, so I have been busy non-stop helping her for the past week. I babysat some kids for a couple of hours yesterday. It's funny to think that I've only been out of the hospital for about 1 week too!

ACCEPTED!

Wow...that was quick! I got an email this morning saying that my application (that I submitted Sunday) was incomplete. So I logged onto the link where you can check the status of your application. And to me, it looked like everything was complete and there was no indication of missing information. While looking over the information that I submitted, I noticed that it said a decision had already been made and that I was admitted for the Fall 2009 Term! So I replied back to the email that was originally sent, verifying that all my information was complete. I just got a reply back and the admission counselor said yes. That the email probably was automatically sent out and that everything looked good...and CONGRATS on being accepted! So yay...I'm officially accepted. I guess now I just wait for my pre-nursing advisor to be assigned. I guess I will go ahead and look into the class schedule for this fall this week too! That was such an easy process (so far). I guess it helps though that I'm returning to the same university so I didn't have to provide any transcripts or proof of degree!

Finally!

I finally just completed my undergraduate (post-baccalaureate 2nd degree seeking) application for Nursing School (or rather, pre-nursing). Now I just wait to see if I get accepted (which I will), meet with my pre-nursing advisor...and begin classes...YAY!!

This weekend was so WET WET WET and stormy here.....UGH! I didn't make it to the lake yesterday, because I didn't want to risk getting sick. I've rested a lot today though...so ready to get out! I hope everyone had a great weekend!

Grilling Goodness

Finally...I have the time to do the usual Friday Grilling Goodness. If you would like to participate in this Friday Meme, check out Tina's wesbite!

1. What's the heaviest thing in your purse? Right now it's probably my wallet. (not that I have a lot of money...but it is a little bulky and has a lot of "stuff" in it)

2. Do you mostly use cash or debit/credit cards? I mostly use my debit/credit card. I would rather use cash, but don't seem to carry much of it lately!

3. Do you cut your hair shorter in the summer or pull it up a lot? I try to keep my hair cut during the summer. Lately though, I've just been cutting it every 3 months. If I am at the lake or beach, then I will pull my hair up in a ponytail. I do NOT like to deal with extra long hair though during the hotter/summer months.

4. Do you like your man scruffy or clean shaven? Clean Shaven all the way!

5. What have your children done/said to embarrass you lately? No kids...sorry!

6. Do you use plug-in type air fresheners around the house? No

7. Do you have any interest in the NBA or NHL finals? (Do you even know who's competing?) No....don't really care or pay attention to basketball or hockey. I watch baseball and college football. And no...I don't know who is competing :)

8. What is weighing heavily on your mind lately? School, cruise and staying well. I'm enjoying be out of school. But I really truly want to go back and get my nursing degree, which is still on for August. But the more I get sick (and this year has not been good so far), the more I worry that I will not be able to do it. I'm just doing a lot of praying and are going to do everything I can to stay healthy (although most of the time it is uncontrollable). I'm a little nervous about my cruise and what my transplant team is going to say. But are SO SO excited about the cruise!

It's Official!

I got my diploma in the mail yesterday (Wed)...YAY!!! It's still weird to think I've actually graduated and have a degree (and can make money with it). And they got the correct honors on the diploma as well: Magna Cum Laude...which I'm siked about!! Maybe I will post a picture later!!

I opened up my passport...and it looks pretty cool as well!

I'm also finally filling out my application for nursing school (or rather, pre-nursing) tonight or tomorrow!!

I'm going to the lake with some friends on Saturday....so I'm praying I will be FULL of energy and feel really good! I made a Target run today and I had an appointment for my back. Today was the first day I've been out and about, run errands, drove a car, etc. in about 16 days!!

More updates and info to come later!

Home!!

I am home! (And yes, I'm up late posting at 3am.....i guess i should have taken sleep meds). Oh well....at least I can sleep late without hospital interruptions!

I did make it to the CFF Dinner last night (Tuesday). It was very layed back, and we all had a good time!

I do plan on resting the remainder of the week...and actually have strict instructions to do so from multiple medical professionals (and parents)! I have a lot to catch up on at home...(especially scrapbooking)...so hopefully it will work out! Of course, I'm sure I will add in a few errands at some point this week/weekend!

I did go home on high-dose Prednisone for 2 more weeks. I also started using the Advair inhaler last night to see if that helps with my wheezing. I will give it about a 2-week period to see if it is actually helping! My blood sugars have been ok so far. I do have an insulin pen though if needed and will continue checking them for about a 2-week period! My heart rate has still been a little high in the mornings, but I know that will get better. I'm to continue keeping a watch on my O2 sats. Although my monitor doesn't currently work, I can usually tell when they are low. I'm praying they will get back up to 100% SOON!! And I'm hoping the inflammation will be cleared up for good!!

My doctor wants to see me back in transplant clinic on the 24th. We will either start the inhaled TOBI then or the following week (1st week of July). My coordinator is supposed to be discussing my cruise with the entire transplant team today (wed). I am definitely interested in what their opinions will be. On a side note, I talked with my friend who is going on the cruise with me via AIM last night (or rather Monday night). We finalized some details and I think, decided on what shore excursions we want to do. I did find out today that Carnival Cruise Lines is still re-routing the Cozumel port stop (due to Swine Flu). I wonder if they will still be re-routing in August??? I will share our shore excursion details soon!! I can't wait til the cruise. Heck, I'm just ready to get out in the sun.....no fresh air in about 2 weeks during the summer kills me!!

Ok...I think I am actually going to try and sleep now :) Oh...and Brandi is going home today (wed)...YAY!! She did an excellent job on her PFT's yesterday (Tuesday)...and actually gave me a little credit...how sweet! You got to love her for that!

I'm looking forward to finally editing the layout/design of my blog!!!

Going Home!!!

I finally got a definite answer on going home tomorrow...YAY!! I am SO SO ready to get out of here! I think I still have a little more to improve, but feel like that will happen once I get home and back into my normal routine (although, I'm not sure what that is right now or will since I'm done with school and not currently working). My doctor wants to continue doing high dose steroids (Prednisone) for about 2 more weeks. UGH!! At least it will be oral and I will be tapering the dose! And I don't have to deal with home iv abx this time. Right now I am still on 40mg of Solumedrol per day (which is a lot). They are tapering me to oral Prednisone tonight, so that will be good. I just took an oral dose of 40 mg, for a total of 45 mg today. But tomorrow I will begin 40mg once a day. I'm not used to taking this much steroids at a time. But I definitely feel better from it!! But at the same time, I hate being shaky and having headaches. I also think it is giving me some joint pain as well.

They actually sent a Diabetes Nurse Educator in just a little while ago to "refresh" my memory on checking blood sugars and taking insulin. I really didn't need it, but didn't argue with them. I have a meter at home and check it occasionally (well, a few times a year). I'm actually going to try and get an insulin pen to use instead of the needles. The educator showed me how to use the pen, and it looks awesome. And it will last me the entire time. This will only be probably a two week ordeal, or less, so I'm not too concerned. And it is just using a sliding scale, and fast-acting insulin. I may just have to cut back on my McDonald's McFlurry's for a little while :) I've been extremely blessed not have any issues with my sugars the last 4 or so years. I never had any issues prior to my transplant either (with the exception of a few months). Most CF patients have diabetes and have had it a long while, so I am really thankful I don't have to deal with this on an ongoing basis.

I did wake up a little short of breath and with a high heart rate this morning. But once I finally got moving around, it got better. I was extremely sleepy too and haven't slept that great, especially the last few nights. I've also been in a lot of back pain, which probably contributes to the high heart rate. I finally got some Ultram ordered instead of taking the Lortabs, will which will hopefully help! My heart rate is back into the 80s and 90s now while sitting in my bed. And my O2 sats are hanging out around 94-95 right now. Hopefully they will continue to improve as well, and get back up to 100% at home. I am really going to get back into jogging/running once my energy returns! Or that is my plan!

My lungs are moving air much better, according to the NP and the doctor. I asked the NP about the cause of the inflammation. She just said for some reason my lungs are more prone to it and due to my CF. But I'm planning on the steroids knocking the inflammation out for good. They may decide to do a bronch later on if the wheezing and pneumonia continues (which is fine with me). Once the steroids are completed, my doctor does want me to try the inhaled TOBI the first of July. He said we can talk about it later, and I may not have to do a full month of it. Possibly just a couple of weeks, which would be nice. I am also going to try using the Advair inhaler again to help with my wheezing. We'll see if that works. I imagine I will be returning back to transplant clinic in about 2 or 3 weeks as well.

I have a dinner with the CFF staff tomorrow night at one of our Great Stride's walk chair's house (just the 4 of us). So my plan is to get out of here by lunch time tomorrow, go home, take a shower and get to the dinner by 6:00.

Oh...my passport came in the mail today...YAY!! I had another visitor from my church this morning as well. I also went up last night to the CF/Pulmonary floor and visited Richard (Kori's husband) and another CF patient who is on the transplant list. Brandi and I are ordering Chinese food tonight..YUMMY!!

Thanks for all the support, prayers and comments through my hospital stay!! It truly means a lot!

Day 12

Today is day 12 of Iv antibiotics! Just a few more days...yay!! I feel like I'm improving each day a little bit. Usually by this time I feel pretty good (and also at home back into a normal routine). The doctor on service hasn't really said much. So I'm just hanging out and waiting to go home....on Tuesday! Yesterday my aunt came up and visited for a little while, which was nice. She also brought me some movies to watch (via Brandi's computer). I'm continuing to get steroids, but are tapering off of them slowly. I can definitely feel the energy from them...which is good. But they also cause other symptoms, which I wouldn't mind avoiding.

So...now for some good (or better news): Last night around 10:00, which is the time for nightly vital signs, my 02 sat was 100!!!! YAY!!! It started at 97, then slowly worked its way up! I'm so excited. It's the first time I've seen 100 in at least 12 days. And who knows, my 02 sats were probably a little low at home before I came in. My resting heart rate is back into the 80s (70s while sleeping). And my heart rate with activity is decreasing as well and hanging around 115/120 (which is good compared to 150-160 not too long ago). The mornings are still slow to come around, but getting better. I told the doctor this morning that I was still wheezing, but hoping it would go away (and that it should according to some other medical professionals). His response was "It should. It has in the past right?" I was like, yea. YES...it does go away on most occasions, but has returned quite frequently the last several months and and sometimes is quite severe. I'm not too sure if I am pleased with his response or not. I think tomorrow I might approach him about it and ask him about the inflammation. I HATE wheezing, and I don't normally wheeze. So we will see what happens. Overall, I am definitely better and ready to go home!!! And I know pretty much everyone agrees that they want me doing inhaled TOBI (month on, month off)...UGH! But I guess you got to do what you got to do!

I more than likely will not be teaching VBS next week. There is still a chance that I might go Wed-Friday, but haven't decided yet. I have a dinner thing for the CFF Tuesday night (which I still plan on attending) and a LOT of stuff to get done at home. Then I have a lot going on the next week as well. I've got to get my energy back....it gets wiped out when you are in the hospital for 14 days (and oh yea, when you have pneumonia and inflammation of the lungs)!!!

Brandi's aunt brought Outback for dinner last night! Not sure what my food plans are today! I did go outside with Mom for a good while yesterday. Another one of the transplant patients that is in the hospital was outside with his wife, so we had a nice LONG chat!!!

Please pray for major improvements in the next few days, including NO wheezing, no SOB and the return of ENERGY!!! Thanks for the continued comments and prayers. I hope everyone's weekend is going well!

Friday Hospital Update

It's Friday, and I wish the day was over! I originally expected to be home WAY before now!!! I am feeling a little better today. My headache has returned though this afternoon and is really painful and annoying. I did walk down to Starbuck's earlier today with Brandi, which was a nice break!

I just say my doctor a little while ago. It looks like I will be here until Tuesday of next week, which will be a total of 14 days...UGH!!! I really pleaded my case to him this afternoon, but didn't have much luck. He said we might could do home IV's, but didn't sound to positive about it. It's really too late in the game now, since it's the weekend starting tomorrow. It would be difficult to arrange. Another doctor comes on service starting tomorrow, and he happens to be my favorite. So it will be interesting to get his take on things. Dr. Y said today that he didn't want to stop the treatments at 10 days (today). He felt like if we stopped everything, that the symptoms would return and we wouldn't be completely sure if we cleared everything up. And he didn't want things to return and me to get sick again shortly after. I did manage to get my steroids (solumedrol) decreased to 20 mg twice a day instead of 40 mg twice a day. I told him about my headaches. He denied that the Solumedrol was causing them, but I said that I haven't had any headaches until now. He then said that I had probably had enough high dose steroids and it was ok to start tapering me tomorrow. So hopefully that will cure the headaches.

My 02 SATS are still hanging around 92/93. The NP this morning as well as my coordinator confirmed that they were low from the inflammation. A new NP came on service today and told me that there was a LOT of inflammation in the lungs, which was new news to me. It's so hard to tell sometimes how serious something is when you talk to different people. The doctors and NP's come across so differently sometimes. Oh well. I definitely want the inflammation to go away. And more than likely it's been there awhile and been the culprit of my wheezing and maybe attributing to being sick.

I did get to talk/meet with my transplant coordinator today. We discussed the cruise I am going on in August. She said that she is pretty sure it's ok, but doesn't want her opinion to be the final decision. She said she needed to discuss it with the entire transplant team, including the two surgeons, other doctors and other two coordinators. She said that she would want to monitor me very closely over the next few months. And more than likely would want me to come to clinic two weeks prior to the cruise to make sure all is ok, and possibly go on antibiotics just as a precaution. She even mentioned me seeing one of the travel MD's to get his opinion as well and see if there is anything I can do to better prepare me for the cruise. Especially since I'm going to Mexico. Then she proceeded to say if the team said no, that I would probably do it anyway, and we would just have to deal with it. I'm not going to risk my health, but I've been looking forward to this cruise for so long and most of it is already planned. It was planned back in January/February before the streak of pneumonia and hospital stays started. So I'm interested in what their opinions are. I don't usually worry about things too much. I never put my health at major risk, but I don't let it stop me from doing things either. I've always been known as a person that over-does myself. I hate being bored, and I hate not trying things just because there is a chance I might get sick. I guess this issue is starting to sink in more and I'm realizing that I may have to make some changes. It' sucks....and I'm so frustrated right now. This is the 1st year that I've had pneumonia this much and been sick the last 6 or so months. It's always been a mystery to why I get pneumonia so much during the year. But I think now the transplant team is taking it a little more seriously. Also, seeing some transplant patients pass away recently, scares the heck out of me. I've seen how quickly things can take a turn for the worse. I'm ready to get out and ENJOY my summer as planned. Right now I still plan to start nursing school, but may have to think about some things.

One of the benefits that has come out of this hospital stay and the previous ones is that Dr. Y has finally recognized that my health is not great, and I was never lying about being sick. I guess he has proof on paper now and finally is concerned. I still say he was guy-PMSing when we got in to the big argument back in January. We are getting along pretty well now. I still never will approve of what he did and said to me. But I'm glad he is finally taking my health seriously. My coordinator mentioned this afternoon that she was glad he was finally taking notice and up to trying things to stabilize my health.

Ok...that is enough of my rambling! Back to watching TV I guess!

On a side note....Richard, Kori's husband was admitted to the hospital today. I don't know a lot of details yet because Brandi just notified me. I hope to see her later, maybe this weekend! He is just one floor above me. Please keep their family in your prayers as well! Thank you to all who have been praying for me! It means a lot!

I hope everyone has a great weekend!

Thursday Hospital Update

I'm feeling much better today....yay!!! I slept ok, but have been ok since about 6am this morning. I think the steroids are helping!!! I really don't have anything new to report. My O2 sats are still running low...around 92! I have gotten up and walked a little bit and even went off unit for a little while with Brandi! My HCT only went up to 28....BLAH!! I was hoping to see 38.....that's usually what it is (and what it should be) after receiving a unit of blood. I'm still getting cough medicine throughout the day (even though I don't think I need it anymore...but not going to complain). I was hoping (after a conversation with the NP this morning) that I might be able to escape this place tomorrow. However, after seeing the doctor, he wants to continue everything for a few more days....BLAH!! I really want to go home, and I really wanted to try and still teach VBS next week. But I guess that is a no-go. Maybe I can start on Tuesday?? If I get out on Saturday or Sunday, I would still do it. But the thing is, I need to notify the preschool director so she can plan without me. I hope she's not too upset. So hopefully things will continue going in the right direction!! Please pray for my O2 sats to get better....that may be why I am still getting headaches!

I got lunch today from Newks. One of my favorite nurses and friends went and got it to me! I have a great nurse today too!!! I had a visitor come up this morning and bring me a big bag of candy and snacks! My singles minister also came up yesterday and we had a good chat. He just started, so it was great to formally meet him!! I think our CFF director is coming up later today...which will be nice. And my mom will be up later tonight with dinner! I'm craving a McDonald's McFlurry...so hoping she will bring me one too :) And I think maybe I will have a visitor tomorrow. This is the longest I've ever had to stay in the hospital since the year 2004....so I really didn't expect this and REALLY WANT TO Get well and STAY well so I can enjoy my summer and get some things done!!!

I'm trying to do some work on my cruise reservations while I'm here. I'm waiting for my passport to arrive. My cruise is in about 2 months....and I can't wait...just have to stay well!!!

Thanks for the continued prayers. I am reading everyone's blogs, but haven't felt up to commenting on all of them....so don't think I'm ignoring you....just still recovering from pneumonia!!!

Back to finishing my lunch (late lunch)!! As always, I'll update again soon!!

Wednesday Update

I can't believe it's Wednesday already!! I've expected to be home by today!!

As an update to last night's coughing spell post, it continued to get increasingly worse. I had the following to help stop the cough and relieve the pain: Four 7.5 Lortabs, Robitussin with Codeine (3 times), 1 mg of Morphine, another potent cough medicine, albuterol aerosol and finally a type of Epinephrine through a nebulizer. Unfortunately, none of the remedies helped. I started getting SO exhausted! I ended up seeing the on-call resident as well. He really couldn't do anything else. He called Dr. Y at home (my doctor) and he didn't have any suggestions either. They did do a chest xray, and it looked fine. I finally fell asleep around 2:00am last night. I feel crappy today and exhausted. I had a chest ct scan this morning. And have been sleeping on and off.

As we speak, I am getting a unit of blood to boost my HCT up. It was still 20 this morning. So hopefully this will make me feel better. My potassium was low as well, so I was giving extra potassium too. I have not see the doctor yet. My estimate date of going home is still Friday.

I'm going back to resting now. I;ll update again soon.

Update 4:45 pm: I saw my doctor shortly after lunchtime today. My chest CT showed some inflammation of the airways of the lungs. So they are going to give me some solumedrol (high dose of steroids) for a few days. They are also going to do some tests to make sure my anemia is not coming from anywhere. I'm done getting my blood. I'm exhausted, and have literally been sleeping off and on all day. Because of this set back last night, I'm not sure when I'm going home????????

HCT????

A couple of people have asked what your hematocrit (aka: hct) is: It's the measure of blood in your body! It is also linked the amount of iron in your body as well. Average for a female is around 36-40. When your hct is low, you are usually really tired and have little energy. Average for a male is a little higher. In the majority of transplant (post-tx that is), our hematocrit runs low...usually upper 20s, lower 30s (for females). I never had any issues with mine until after my transplant. Usually, if it is 23 or below, the doctor gives me blood. But that differs between doctors. If it drops any lower, than they probably will do that. We'll just have to wait and see. You can google or do some kind of search to learn more about your hematocrit. I'm not very good at explaining it. But that is a brief overview. Sometimes medicines and IV antibiotics can decrease the level too.

I had a bad coughing spell (and still do) this afternoon. I've had cough medicine (with codeine) two Lortabs and a dose of phenegren.....and the stupid cough is still there. I guess it is from moving around/walking, etc. Hopefully it will go away soon!!!

Tuesday Morning Update

I just saw my nurse practitioner. Haven't seen the doctor yet, but thought I would go ahead and write an update!

Everything is stable. My O2 SATS are still low, but they feel they will get better once I get over the pneumonia. I still don't like them being low though. I also feel a little more short of breath today! Evidently, my hematocrit is really low: 20.....I was 30 at clinic last week....so not sure about that. I always run in the lower range, but don't think i've seen it that low in a LONG LONG time. She said if it got any lower, then they probably would give me blood, but they are going to watch it. I didn't have an xray today, but the NP did confirm that I did have pneumonia, and as of yesterday, the xray was not clear yet. I'm sounding pretty clear, but still have diminished sounds at the base of my lungs (which is the common spot of my pneumonia). She said Dr. Y wants me to definitely at least complete 10 days of IV abx. Today is day 7. So whether I do that here or at home, i'm not sure. In reality if I just have to do 10 days of abx, then i would rather just stay here until Friday instead of fooling with everything at home. I am teaching Vacation Bible School next week (1 year olds), so i need to be home by Friday so I can have a couple of days of rest. So I guess I will see what the doctor says when he rounds this afternoon. So....my SATs and HCT need get better. I'll update if there is new news when the doctor rounds later today!

Monday Update

Well, my doctor actually came around fairly early today! Still not much news. My sputum culture did grow out the usual gram-negative bacteria. More than likely it was psuedomonas that caused the infection. So they are stopping my Vancomycin and just continuing with the Tobra and Fortaz.

I still didn't sleep much last night, so I'm trying an Ambien tonight! My O2 sats have still been running lower. I kept the monitor on for a few hours this morning, and it was consistently around 92/93. My doctor ordered a spirometer for me to blow on, to help get them back up. He said it's probably just from lack of air moving around in my lungs. So we'll continue to monitor that! He did say that my xray did not look any worse today...so that's good news!

No word on when I'm going home. I'm starting to think that it may not be on Wednesday....who knows???

I'm about to take a shower and after receiving one of my IV antibiotics, walk around the unit some!! My nurse today (and some of yesterday after arriving on HTICU) got me lunch at a nearby restaurant. She's so sweet! I definitely feel at home on this unit!

I hope everyone's Monday is going well so far! I'll update again when there is new news!!