Breathe Easy, Emily.

As I commented on Emily's blog a few minutes ago, I'm not even sure what to say or what to write, other than I'm in extreme shock that she is gone. Just yesterday, she was making good progress and expected to fully recover. What happened today is beyond our comprehension, and only God knows what happened. I'm thankful she is now at peace, in Heaven, with our Lord. She was such a strong Christian and God-loving person, that I know she was not afraid to walk right into the light of Heaven. But still, I am at a loss for words. Emily and I had become good friends. She was transplanted at UAB and followed by UAB as well (same place I am). We frequently talked via facebook, text messaging, and via blogging. And when she came to Birmingham for clinic visits, we tried to grab lunch together. I would visit her in the hospital when possible. She had a wonderful husband and daughter....why would God want her to leave this earth now???

(September 2008)

Please pray for Jason, her husband, and Faith, her sweet little girl (and of course for the rest of the family and friends). I'm still in shock, crying, emotional, and don't know what to do. Emily, Shaun (who passed away last year), and I were good friends and now both of them are gone. WOW! Why did such a freak thing happen like this. I can't be angry...because I know she is breathing easy, and in no pain at all. But it is still going to be tough. I think it is tougher for me to deal with when a CFer passes away that is post-transplant. Because it is from post-transplant complications and not directly CF-related per se. We get the transplant to live a normal life...not to go through all these extra complications. And it scares me too....proving that things happen quickly and suddenly, in which sometimes you have no control over. Her infections have been pseudomonas pneumonia, the same as mine....definitely a wake up call.

(Fall of 2008: Emily, Me, Shaun)

Emily...I love you and will miss you!!!! Thank you for all of your support for me and being the strong, Christian woman you are!

CF Resources/Websites

I have posted a new website (blog) that provides information and resources for Cystic Fibrosis patients and families. CysticFibrosis.Net has a wide array of information on CFers staying healthy, the latest news regarding CF research and medications, suggestions and advice for parents on managing their child's CF and much more. I hope you will take the time to visit the website/blog. The site allows comments on all posts.

Great Strides

I have posted the Great Strides Widget on the left of my website. I never removed the widget, but it has been updated and linked to my 2010 Great Strides Miracles Team. I know most of my followers are CFers or CF caregivers and form their own individual Great Strides Teams. If any of my followers do not have a direct connection to CF or are not dedicated to donating to a particular team, feel free to make a donation to my Miracles Team.

Great Strides is the CF Foundation's most successful fundraiser of the year. Great Strides Walks happen all over the country! We use these donations (and all donations from other events as well) to fund clinical trials and research to find a cure for CF. We have made so many advances over the last year towards finding that cure....and now are extremely close. But we cannot continue making these advancements without your help...physically and monetary. So I highly recommend making a donation to CF to help make this happen. All donations are tax deductible and you will have the wonderful feeling that you are truly making a difference in the lives of those with Cystic Fibrosis.

I have had a Great Strides team for many many years, and are very excited to see what 2010 has in store for our local Chapter walks. Clicking on the Great Strides widget to the right will take you directly to my Great Strides Home Page, where you can make a donation and/or sign up to participate in the walk-May 22nd for Birmingham, Alabama.

Thank you in advance for your support. And thank you to all of the CF families that have created a Great Strides Team....we really appreciate your effort and support.

Friday Fragments

Ok...so the title of this post may sound a little childish...but I had to think of something catchy. I wanted to do a post with little updates (similar to Tuesday Tid-Bits and other catchy blog memes). So here it goes...

1. Classes went ok this week. I ended up missing classes yesterday morning due to feeling sick and running a low grade fever. But I managed to attend my lab class last night, and it wasn't all that bad. My professor decided to deduct 20 points off my grade (not happy about that) for missing the 1st class, which I missed the first 2 lab "experiments." But from what I've been told, the class is not all that hard, and I should be fine. Keeping my fingers crossed.

2. ENT Appointment yesterday: Sinuses evidently look good (despite them being the culprit of last pneumonia and causing havoc the last few months). Doc took a culture to make sure nothing is growing. If so, I will start on an antibiotic. He gave me a script for bactroban topical cream steroid and wants me to mix it in with my sinus Neil Med Rinse....not too sure about that...lol). Oh..and my deaf right ear I've been having is due to fluid. So he told me to try and pop my ears 3-4 times a day and it should resolve...who knew???

3. The moving of "me" downstairs is coming along and I hope to be moved in this weekend. If not then, the next weekend for sure. We have to have a little "brotherly" help moving some of the furniture pieces!! I will post pictures soon!

4. I renewed my CF Great Strides Team this past week. Excited to get started on that as well as helping out with all of the other walks our Chapter hosts!

5. Wednesday I had the opportunity to eat lunch with our CFF staff, which included our new executive director.....like her very much and excited to have her join our chapter.

6. Looking into buying a mini laptop (Netbook). Need one for those times in the hospital and to use on vacations, etc. I think my Mom and I are going to split the cost, so she can use it for work as well. But this is just an inexpensive purchase....not like when I customized my awesome desktop from Dell. We basically just want Internet access and then need something like Microsoft Office so I can download school documents and my Mom can download work documents into Word, Excel, etc. Any suggestions though? I really want to stick with a Dell or HP!

7. Prayer Requests:

Brandi, who is in the hospital and unfortunately, not seeing much improvement, if any. Please pray that the doctor's will get her on the right regime of meds and whatever else needs to be done to get her feeling better! Click here to visit her blog!

Guy (name will remain anonymous): Post transplant-CFer (was transplanted in July), currently suffering from pneumonia since late November/early December; continues to have fevers (and HIGH fevers) for several months; He has been hospitalized and completed home IV abx multiple times and the fevers still remain, as well as some other symptoms. He has been treated for a fungal infection, just in case. He underwent a surgical biopsy this past week and most cultures have come back negative, with the exception for pneumonia with pseudomonas as the bacteria causing agent. They are still awaiting more culture results. Please pray for ANSWERS, so he can be rid of the pneumonia, fever, and other symptoms. It's almost like his body is not responding to meds, despite all the cultures and sensitivity testing.

Emily, who is currently fighting pneumonia again, and was put back on the ventilator yesterday. She has definitely been going through a rough time and can't seem to fight these infections. Visit her blog for more info and prayer requests.

Ok...so I think that is the end of my "Friday Fragments." I thought maybe I had more things to share...and more "fragments"...not necessarily paragraphs...oh well!!!

I hope everyone has a great weekend!

Checking In...

Sorry for not blogging much this weekend. As you know, I was discharged from the hospital last Wednesday afternoon. Thursday was spent resting and just hanging out at home. Friday, my Mom and I began moving furniture downstairs, cleaning, and moving stuff back in the house from the garage.

We finally got our carpet installed downstairs this past Thursday. About a year and a half ago, we had a plumbing leak, and it flooded several rooms downstairs, including part of the den. Ever since then, our floors have been concrete and covered with rugs. The entire downstairs has been recently painted, and the bathroom is being renovated as well. The decision was made about a year ago for me to move downstairs, so I could have my own little suite. FINALLY!! I love my parents very much, but I've also really really needed my own space. So now the carpet is installed and we are moving furniture in, out, around little by little. Friday night through tonight was spent working really hard. It will still probably be another week or so before everything is moved downstairs.

I will have a bedroom, own bathroom, and another misc. room that I am using for scrapbooking and storage. I will be able to use the den to watch TV, hang out with friends, etc., instead of having to share the upstairs great room with my parents. We have a so-called bedroom also downstairs (in addition to the other bedroom). It doesn't have a closet, so it can't technically be a bedroom, but it's a really good size/space. I am finally going to have an area for scrapbooking, space to spread out, scrapbook storage, etc. I'm more excited about this than anything :)

Tomorrow I start my school semester (for me that is). This is actually the 3rd week of classes, but the 1st day I am able to attend. I'm really nervous and don't like coming in behind. Last Thursday I still didn't feel that well, so did not attend classes. My nutrition class instructor has been very nice and posts everything online, including her audio lectures. So I'm not worried about that class. My physiology lecture instructor knows I was in the hospital with pneumonia and is excusing me from missing class. However, I know I am behind in reading. He has posted his power point notes online. My physiology lab instructor is deducting points off my grade, despite me providing him with an excuse (luckily it's only one class). He said there were more penalties for unexcused absences. But it still really frustrates me that I have to loose points because I was sick with pneumonia and in the hospital. I think that is just WRONG!!

Sorry for the long post!! I will definitely be back on track for blogging. I hope everyone had a great weekend!!

Home, Sweet, Home!

I'm home! I got home yesterday afternoon and are thoroughly enjoying it. I didn't feel up to going to class today. My plans are to get back full swing into classes on Tuesday. I'm looking forward to a restful weekend.

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

Thursday Night Update/Football

As far as my lungs go...everything has stayed about the same today. I kept my oxygen off during the day. I am going to turn it down to 1 liter during the night instead of 2 liters, to see how I do. I tried to walk more today, which I think I accomplished. My heart rate is still in the 150s or above when walking, but I know that will get better.

Yesterday evening and night, my stomach started getting major (and i mean major) gas pains/cramps. I have no idea why, but I was burping and passing gas(sorry...tmi) a whole lot. My stomach kept getting bigger and bloated looking. And the pain became to much to handle...I was in tears. I got some pain medicine (IV Dilaudid..not sure how to spell that, sorry), which took the edge off. I was finally able to fall asleep with minimal cramps. This morning was better and the cramps, burping, etc., was minimal. Then all of a sudden this afternoon it began to get worse again...to the point of tears. I took multiple doses of simethocone (anti-gas med), as well as a "good bacteria" pill to see if it would help. It really didn't help, and I had to get more IV Dilaudid to relieve the pain. This is some strong stuff...seriously. It took off the edge of the pain again, but now the cramps are coming back again strong.

Everything "down below" (as far as digesting, etc.) is working fine. They did an xray of my belly tonight to check for obstruction. It didn't show any obstruction, but it did show TONS and TONS of air. How on earth does this much air get into my stomach. It looks like I'm having triplets. It's the worse gas pain I can ever recall having since my obstruction after my transplant in 2004.

I'm afraid to eat dinner, thinking the food will make it worse. I have lost so much weight and really need to start gaining. But these stomach issues won't leave me alone. I'm praying we can figure something out. I have no idea what the next step will be.

Tonight is the National Championship Football Game, in which Alabama is playing against Texas. I am an Alabama fan..so ROLL TIDE. One sweet nurse brought me some stuff to decorate my room with. I managed to decorate my door, but that was all I felt like doing today. I have some pom poms to cheer them on...GO BAMA!!!

Still no mention of when I will go home. I missed my 1st day of classes today. Our weather guys had been predicting a good bit of snow, and I was praying classes would get canceled. Most of the elementary, middle, high school, and daycare classes were closed for today and some for tomorrow. It really didn't end up doing much. It did snow and sleet, but nothing really stuck.

Evidently, I have 2 pre-lab assignments due next Tuesday (which is my 1st physiology lab class). I'm going to try and get some reading/studying time in this weekend. My goal is to go home on home IV's on Monday, so I can attend classes on Tuesday.

Sorry for the long update/post. Please pray that these stomach issues will be resolved or they will figure out what is going on. My doctor did page the surgeon who performed my gallbladder surgery to make sure nothing was going on in that department.

Oh...and we transplanted a young girl (well, about 24-25 year old) Monday evening. She needed a heart and double lungs. The transplant was a big success and she is having a very rapid and successful recovery. Please keep her in your prayers that things continue that way. I can't imagine getting your heart transplanted and your lungs at the same time...WOW. She had been listed for a long time, because you had to have the organs from the same person, and that is hard to come about sometimes.

I hope everyone is staying warm and has a great upcoming weekend.

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.

Baby Steps

Sorry for no update until today. I haven't really felt great at all these last few days. But I feel like today could be a turning point.

Yesterday I was able to eat 3 meals, which is a 1st in a LONG LONG time. And I really hadn't eaten anything in about 1 week. So that is definitely a praise! So hopefully the nausea will hold its on, and I can continue to eat and gain some of this weight back that I have lost.

Yesterday I was having a really hard time breathing. I had been on continuous fluids since admission (Thursday) and that on top of eating yesterday sort of sent my heart rate over the top. I couldn't get it below 130. I knew it was from the fluid, because my stomach was exceptionally full and big and it was pushing on my lungs. I finally got the on call doctor to discontinue the fluids. He also said I had some edema, some excess fluid, so he gave me a dose of Lasix, which seemed to help a little. Not having those continuous fluids has been a huge relief and I have been breathing much better today. Last night was very rough and I was very restless as well. They ended up giving me a dose of Ativan, which seemed to help calm me down a little.

Right now the infection is due to pseudomonas bacteria, which is usually the culprit of all my infections. The antibiotics I'm on are currently sensitive and should cover the infection pretty well. So my doctor wants to continue with what we are currently doing. My WBC count
is down to 5, which is better for me. I usually hang around 3-4. My kidney functions are much better as well.

I have still been using the oxygen. However, I just had some visitors stop by and I decided to take off the oxygen about half way through the visit to see how I felt. When they left, I checked my O2 saturation and it was 95...YAY!!! So I'm hoping that at rest, I can remove the supplemental oxygen and just use it with activity, walking, etc. (and possibly at night while sleeping). That would be a huge step as I have been worried about the oxygen usage.

My hematocrit level is 21, which is pretty low. My nurse practitioner wants to make sure it is true anemia and not from the fluids. If it is true anemia, then they will more than likely give me some blood, which in turn will probably make me feel much better, or at least give me more energy. My favorite doctor came on service today along with an NP. I didn't have an NP upon admission and through the weekend. My guess was because it was a holiday and weekend. So I'm glad to have an NP, because it makes communication so much easier.

I'm still feeling crappy, but feel like I have made some baby steps toward getting better. I really wanted to be out by Wednesday so I could start classes on Thursday, but doubt that will happen. We'll see though. I'm not putting it out of the question just yet. If I can get off the oxygen, then he would probably let me go home on home IV's..maybe.

Thank you for your continued prayers...they definitely mean a lot to me and really work. This is a tough infection that hit me hard out of nowhere...totally unexpected. I hope everyone is staying warm and well!! And I hope all of you have a blessed week! I will update again tomorrow!

Hospital

I apologize for just now posting this. I got a lot sicker Wednesday morning. My coordinator had me come in to get labs and chest xray, then sent me to our outpatient room on our trasnplant floor. My xray actually looked ok; my labs were a little off, but not too bad. My doctor decided to admit me to see if we could figure out what was going on. I was begging inside that I would get admitted because I felt so bad. I am having the hardest time breathing. It's the worse it has probably been since before my transplant. I had to use a wheelchair to get around while I was getting my labwork and xray done. Right now, I get so out of breath just walking to the restroom, which is probably 5feet away.

They are waiting on cultures to come back to see what's going on. This breathing is serious. They have me on 3 liters of oxygen, because my O2 saturations were dropping below 90. I am on 3 IV antibiotics right now and albuterol nebulizer treatments around the clock. I have also been throwing up for the last 3 days or so. So I am taking IV phenergan and Zofran around the clock as well. I haven't been able to hold anything down and haven't eaten anything really since Tuesday morning. My fevers have seem to subside. My creatnine and some other kidney functions are out of whack. That's understandable....and they have me on continous fluids right now.

I will try and post updates when available. I'm not feeling like doing anything. And I literally can barely breathe....looks like I have a ways to go before being discharged (that's not even in the plans right now). Classes start next Thursday, so I'm praying I will be well by then.

I hope everyone had a great New Year's Eve and Day today! May God Bless the upcoming year for all of us.