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. 
 

Question for my readers-Enzymes

I have a question for those of you who follow my blog! As some of you know, Ultrase Digestive Enzymes are not being manufactured anymore and most pharmacy's are out of stock. I had a couple of extra months, but I'm on my last bottle. For those of you that have taken Ultrase MT, what have you switched to? Or have you switched yet? or what are your thoughts? I have been on Ultrase my entire life and hate to introduce something new to my tummy :)   I have a supply of Creon. I've heard different stories of Creon....of it working, and of it not working very well. I read on the directions that you have to take Creon enzymes 1 hour before you eat something. Well....that doesn't really work in my fast-paced world. With school, etc., there is no way possible for me to remember or have the time to take them 1 hour before I eat. Half the time i don't even know when i'm eating. The great thing about Ultrase was you had a 2 hour time-frame. You could take it within 2 hours before or after you ate.

I know the other choice of Enzymes is ZenPep...which is fairly new. Are there any other choices? Having had a transplant, I don't see a CF doctor, although some of our transplant doctors are CF doctors. I haven't had the chance to ask 1 of the docs.

So i have no clue what to do. Advice? Suggestions?

Thanks!

Creon Survey.....Paying $50!!!

Patients taking the pancreatic enzyme medicine CREON ® (pancrelipase) are needed to participate in assessing the CREON drug safety program. Eligible patients or their caregivers will complete a 15-minute internet or telephone survey and will be paid $50 for completing the survey. Patients and caregivers may only take the survey once. For more information and to see if you are eligible to participate, please contact BioTrak at 866-866-5856 or support@biotrak.com

I don't take Creon, but on CysticFibrosis.com, several people have commented they have taken the survey and gotten paid! So check it out if you do take Creon enzymes!!

This was in the latest issue of CysticFibrosis.com email newsletter.

MIA/Update

I promise I'm still here and plan on blogging. My schedule has just been way to crazy. So I apologize. I hate not having the time to blog :( I'm up late studying, and couldn't stand the thought of me not having posted anything since the 1st week of July.

We had our Nursing School Info Session on Friday. We ordered our uniforms and registered for classes, amongst other things. We have a more detailed orientation session the week before classes start. I have a CPR class on July 16th;

My Blood Pressure Saga continues with a new medicine as of Friday. So far, it is magical and doing the trick. Last week we had increased the dose of HCTZ (the diuretic), but for some reason, my BP decided to get worse, instead of better, or even just stay the same; overall, the HCTZ was good for removing the fluid I had gained, and really keeping off any excess fluid I may be retaining, but not much in the Blood Pressure situation; I am now on Lisinopril, and my BP has dropped dramatically within just 2 doses of it; But it may be just a tad too much; not sure yet. Will re-address with transplant coordinator on Monday.

My back pain seemed to stabilize and actually get better, until I decided to go tubing on Memorial day weekend. However, finally, it has calmed down somewhat. I had taken a break from my physical therapy appointments, because I didn't want to use up all my visits too soon; I decided to go in for an appt week before last, and I will go again this week; so hopefully that will help.

Two exams next week (Micro Lecture Exam) and midterm for Microbiology Lab Class. And other assignments, etc. for my online Developmental Psychology course.

Babysitting tonight for several families combined

Our local CF Chapter has a Young Professionals Board, in which I am a part of. We have a get-together/meeting Tuesday night. Oh, and our CF chapter finally got its results in for our local (Birmingham) Great Strides Walk. As most chapters are required to send all the money/collections from each Great Strides Walk to a third party now, it takes awhile before everything gets credited to the Great Strides teams, walkers, etc. So far, our Miracles Team has raised a little over $8,730. We may have a few more donations coming in; I'm very proud of my team and all their hard work; and I personally met my goal of $4,000.....raised about $4,375.

I have transplant clinic on Wednesday. I'm on week 3 of my TOBI; i think a Sinus infection has creeped in my body (hoping that's all it is); I have to get all my medical forms signed and vaccinations required for Nursing School Medical Clearance.

Babysitting this upcoming Friday, then headed to the lake for the weekend. Unfortunately, we don't get a day off from classes, like most companies/work offers for the July 4th Holiday.

I really want a beach vacation. Trying to decide about oil spill situation....and if I can go due to my crazy schedule, that works with the other parties involved???

Ok, going to try and get some sleep :)

Brief Update

Just when you think your life has calmed down....it gets crazy again :) Sorry for no blog posts like I had intended to do during my 3.5 week break from school/classes. I was busy volunteering with our CFF Chapter, busy preparing for my walk team, babysitting like crazy and then just daily life stuff like sleeping and eating :) I volunteered at our last local CF Great Strides Walk on Sunday. It was a hot day...a fun day, but it flat wore me out.

We did get to go to the lake over Memorial Day Weekend. Despite rain off and on, we had a good time, and Monday ended up being a pretty good day....which included some tubing...in which I am still completely sore and back pain city. Oh well!

Anywho...classes for the summer semester started back last Wednesday. I have classes 4 days a week...which is a bummer. Usually you can schedule your lab and lecture class on the same day. However, they did not give us that option this semester. And since it is a shorter semester than the fall or spring, we have lab class 2 days a week, whereas during the other 2 semesters, it is only 1 day a week. So needless to say, I'm busy again and back into studying already. We have our 1st Microbiology Lecture Exam next Monday (a week from today). I have found that I don't like the Microscope very well in laboratory...not very talented at looking at things. Hopefully that will improve. In addition to my Microbiology classes, I have an online Developmental Psychology Course.

I am babysitting occasionally on Fridays and weekends...although it has slowed down a lot compared to when I was off from classes for a few weeks. I am teaching Vacation Bible School next week in the mornings...and then I will venture to classes shortly after the kids leave. Usually you have 2 Adults/teachers in each class. But due to limited volunteers, I am on the only adult/teacher for 6 lovely (hoping lovely) 1 year olds Monday-Wed, and 7 lovely 1 year olds Thursday and Friday. I will have 1 teenager helping me. So I have to prepare a lot more than I usually do this week. Usually I just kind of swing it...look at lesson plans, activities, etc., as we go throughout the day. Not this time. Most of the kids are 1 1/2 -2 yrs old, but not yet officially turned 2 yrs. I'm excited, but it will be a crazy week!!!

Ok..due to limited available blogging time and me really needing my sleep lately...that is about all I can share tonight....other than 2 more quick things!

First...if you don't follow me on facebook...then you haven't yet heard...I got accepted into Nursing School. So yes, lots of stuff to do for that this summer as well. Classes will start in August..but there will be lots of info sessions, meetings, and other stuff to complete this summer. Nevertheless, I am thrilled and so excited! Please pray that my body/health will cooperate throughout the nursing program!

And one more prayer request: I am still having issues with my Blood Pressure. I'm not sure if I have mentioned this or how much detail I have discussed? I went off the Norvasc, as apparently it was causing my body to retain fluid badly...and I mean seriously...I gained 7 lbs of fluid in my tummy and feet/ankles. It was awful. Upon determining that there was no more blood clots in my feet, the Norvasc was stopped, switched to HCTZ and Lasix for 3 days. I peed off the fluid eventually, but now the fluid is coming back into my tummy off and on. Last week, between Tuesday night and Wed night, I had gained another 4 lbs of fluid, but yet lost it at the end of the week...and the cycle continues. My BP has dropped somewhat, but I continue to have very high peaks (150s/100s) and on average, it is still running in the high 120s/mid 130s over 80s-90s, with the occasional peaks. Please pray that we can get this under control!

Off to bed and will hopefully post more soon. Sorry for the long post...but if I don't do it all at once, it won't get done.

New & Improved Pancreatic Enzymes

Although pancreatic enzyme therapies have been around for decades, they are now undergoing a more rigorous review to help ensure that people with cystic fibrosis receive only the best, most effective and safest enzyme treatments.

In 2004, the U.S. Food and Drug Administration (FDA) required that all pancreatic enzyme replacement therapies currently on the market be reformulated and undergo clinical testing in order to receive FDA approval.

More than 90 percent of people with cystic fibrosis take pancreatic enzyme replacements to help the body absorb essential vitamins and nutrients. In CF, thick, sticky mucus builds up in the pancreas, preventing the release of important enzymes that aid in digestion. This build-up can lead to malnutrition. Pancreatic enzymes combat this problem.

The first pancreatic enzyme replacement therapy to be evaluated and approved under this new mandate was CREON® by Solvay Pharmaceuticals, Inc. CREON received approval in May of 2009.

In September 2009, Eurand N.V. announced that the FDA approved its enzyme product, ZENPEP™ — the second enzyme therapy to be granted FDA approval.

In addition, Alnara Pharmaceuticals, Inc. is completing a Phase 3 long-term safety study of an enzyme called liprotamase. Following completion of the study, Alnara will carry out clinical and regulatory activities needed for FDA approval.

Other companies completing clinical trials for pancreatic enzyme products include Axcan Scandipharm (Ultrase® ), Digestive Care, Inc./DCI (PANCRECARB® ) and McNeil (Pancrease MT).

FDA review is an important step to ensure that people with CF are getting the maximum benefit from their pancreatic enzymes.”

Because there is a connection between better lung function and higher body weight, pancreatic enzymes are a vital part of CF care. It is important for people with CF to take pancreatic enzymes with all meals and snacks.

You can click on any of the links above for more information on a specific enzyme, or pharmaceutical company!

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.

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.

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.

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!

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Checking IN.....

I guess my plan for blogging more frequently just didn't happen last week nor is it going to happen this week! SORRY! Studying, work and my health is taking up my time!! I have 2 Anatomy finals tonight (one make up and my lab practical final). I'm not prepared and are so worried. I definitely need the prayers and miracles. I pulled an all nighter Monday night studying. Worked about 9 hours Tuesday, then attended a anatomy lab study session last night from 6:30 to 8:30 pm. Came home, got some dinner and ended up crashing and falling asleep. NOT MY PLAN! I had planned on studying the entire night, or at least most of it. I took off work today, but didn't wake up until 10am. And i feel awful, like i've been run-overed by an 18 wheeler truck. Not sure why and hope I'm not sick! I'm finally getting a little more alert and energized, and will studying 24/7 until about 4:30 today. My anatomy lecture make up test is at 5:30 pm and my lab practical final exam is at 7:00 pm. I'm more worried about that than the lecture make-up! So if you read this today or tonight, I would greatly appreciate any prayers! I know that is not technically something to pray for, but hey, I'm on the verge of passing the class, and I'm going to ask for all I can!

My liver has decided to continue acting up post-surgery. The fluid in my abdomen has not decreased and is actually getting pretty painful and very uncomfortable. I had some lab work rechecked yesterday. Not sure if i mentioned this before or not, but I had to get some lab work done this past Friday due to lots of fluid accumulation. Some liver values were high, I was started on some lasix, and then was re-evaluated yesterday. The lasix really didn't work that much, and my lab values decided to go up a tad, to the point where the transplant team is a little concerned. I spoke to the GI surgery nurse coordinator yesterday. They have decided to do an ultrasound to make sure nothing serious is going on. So I have an ultrasound tomorrow morning. It seems like I can never get away or never get a break from all this health stuff. I have been eating better, but not that much, and really have not been able to gain any of the 8-10 pounds or so I lost. So I really need that to get better as well!

Well, that's all the time I have for blogging. I have a Christmas party to attend tomorrow night (Thursday) and a couple of things going on this weekend. I have my final/3rd Anatomy Lecture Exam next Wednesday, December 9th. I am so ready for all of this to be over with, but want a HAPPY ENDING!!!

I hope everyone is having a great week!

Post surgery/thanksgiving Update

Thankfully, I was able to spend some time with family on Thanksgiving Day. Dinner (or rather lunch) was held at my cousin's house and we had a full crew! The food was good and I was able to enjoy a little bit of it. It was really the 1st solid food I had had in days. The pain is getting better, but still there. It is more soreness than anything and LOTS of swelling.

I had forgotten to mention previously that I have 4 incisions than the normal 2 incisions when done laproscopically because I had some fluid in my abdomen and they decided to go ahead and drain it off during surgery. They sent a sample of the fluid off just to make sure it was ok. All of the cultures came back negative. I think having the 4 incisions contributes to the additional pain.
My mom told me that when the surgeon went in there to remove my gallbladder, it had already collapsed. A lot of use the gallbladder was providing me ;)

I have a lot of fluid in my stomach and some other not-so-comfortable places. I was a little concerned, because none of my discharge papers from the surgery team mentioned anything about fluid or swelling. So I called my transplant coordinator. I had also been running a low-grade fever. So my coordinator wanted me to go up to the transplant unit and get labs drawn. I did that, waited for the results. Most everything was fine except for a few liver function levels were high. So they put me on some lasix...FUN STUFF and I have to get labs redrawn on Monday...so lovely! I'm glad I called though because it could have gotten worse. I haven't taken any lasix in 5 years since my transplant. It ought to be a fun night!!

I guess I better get to studying, as I am way behind. Finals are next week and I am on the verge of passing this anatomy class. I seriously need a MIRACLE for anatomy class right now. Not good!

HOME!

After a little bit of convincing to my transplant doctor, he released me to come home tonight. I got home about 7:00 pm. He wanted to keep me a few more days. But I told him that I thought I would recover better at home. And that I could find more foods to eat at home verses the hospital. So he was perfectly fine with that. He gave me a trial run to see if I could manage the pain with just oral narcotics and not IV pain meds. So far so good. I'm taking Lortabs and Percaset(spelling?)around the clock in addition to nausea meds. I've lost about 10 pounds...not good. The pain is getting better, but is still there and I am extremely sore. I'm just glad I am home.

I'm hoping to be able to spend some time with my family tomorrow for Thanksgiving. But honestly, don't know if i will feel like it or not. I will see how i feel in the morning.

I really expected to be feeling so much better and never expected the recovery to be this tough. Most everyone who had the surgery told me it was very minor pain.

I hope everyone has a great Thanksgiving. I am thankful to be home and thankful to just be alive again to celebrate another year! May God Bless all of you!

Surgery SOON!

My surgery (to have my gallbladder removed) is Monday. I have to be in the admissions area at 6AM...EARLY!!! But hey, I'm all about EARLY as I want this done and over with NOW. This week has definitely been a struggling week: missing work, missing classes, including my final lab class before the final exam. The pain is unbearable, with some days not even being able to stand up and walk. On those days, I'm basically sleeping, taking pain meds constantly and using heating pads constantly. So, needless to say, i am SO SO ready for the surgery. I've also lost about 6-7 pounds (not good for my little petite body). I'm taking anti-nausea meds around the clock, and food just isn't getting along that great with my stomach. I did manage to work the last 2 days...trying to get in extra hours since I will be off work all of next week.

I will update Monday-hopefully-depending on how sleepy and drugged I am :) I will be admitted to the hospital right after surgery to our transplant ICU; as far as how long I will remain admitted is unsure of right now. Definitely until Tuesday; the estimate is Wednesday. Hopefully I will be able to enjoy Thanksgiving with the family and get back into the normal day-to-day routines! It just all depends on how my body tolerates the surgery and recovery. Unfortunately, I have some sort of cold, and my wheezing is out of the roof...crazy and very annoying and making it hard to breathe. I'm hoping everything is just related to sinuses; but it does make me a tad bit nervous about Monday. My blood pressure has been sky-rocketing, which is unlike me. But my transplant coordinator feels it is due to the pain; (so that's my hope too). The pre-op nurse at my surgery consult appointment last week wasn't too pleased. But I assured her it was being taken care of.

Please pray that everything goes well with the surgery and recovery!!! This weekend I will be resting, running a few errands, building a lymph node for an anatomy extra credit project, and last but not least, studying for anatomy lecture and lab finals, which are the week after Thanksgiving. I hope everyone has a great weekend!

CF Education Day Fall Web Cast

CF Clinical Research: Learn, Ask, Join: A Live Virtual CF Education Day Web Cast

When: Thursday, November 19, 2009 @ 8 p.m. ET

Join the CFF for the fall Virtual CF Education Day Webcast to learn the latest in CF clinical research and ask what you can do to join a CF clinical trial. Based on presentations from the 2009 North American CF Conference, you will hear updates about CF drugs in the pipeline and learn the basic principles for clinical research and participation.

The two-part Web cast will feature: *George Retsch‐Bogart, MD, Associate Professor of Pediatrics at the University of North Caroline at Chapel Hill, AND *Elizabeth Hartigan, MPH, RN, CRM, Clinical Research Manager at Children’s Hospital of Pittsburgh of UPMC

The Web cast forum offers an opportunity for questions from the CF community to be answered. This educational tool helps to empower people with CF, families and friends to take an active part in CF care through increased knowledge about the research and the highest quality care.

Click here to register for this webcast!