Bittersweet

These past few weeks have been, well, bittersweet. I had a bronchoscopy on November 30 which found NO Aspergillus, but did find Influenza B. It was so weird too-I had absoultely no symptoms other than being tired, which I attributed to working out more. But they caught it early, and as of tonight I will finish my last dose of Tamiflu =) My PFT's also went up to 2.55L which is awesome! And of course the 2 most exciting things of the day: NO rejection and I get to go down on the Prednisone! All my meds stay the same too. I was pretty tickled with these results =)
The day after the bronch (12/1) Jon and I took Sarge to recieve his certificate as a Therapy Dog! We were some proud parents. Also, with the club we belong to (PAWS) we stuffed gift bags to deliver to the nursing homes. We had a ball, and Sarge was amazing!
Jump forward to the weekend which was especially bittersweet- my cousins are moving to Boston, and it was our last visit before they go. It kills me to think they are going to be so far away. Jenn has filled in as a big sister for me, and Jon and Matt are one-in-the-same. And as for the boys...I feel like I never have enough time with them anyway. My biggest worry is when they see us again (especially Will) he won't even recognize me =( I adore those kids! But Sunday brought a slight smile back to my face...
We went to the One Breath At A Time Christmas party for TGH. I got to meet some really inspiring people-and break the rules. LOL~ I'll clarify: You aren't supposed to eat at buffett style places, and you shouldn't go in public with a bunch of immune compromied patients and not wear a mask. But I was pretty good, I only took my mask off to eat, I think there was like 7 of the 100 that seemed to keep to the rule. I also got busted by the doc grabbing a red velvet cupcake (not even for me!)...He goes "Ok, so now we know why your blood sugars are insane" lol...I knew that was going to happen! After the party and all we headed home to relax.
I recently got some not so good news about family and very very close friends-its too fresh to share, but I'd like lots of prayers to be sent their way. They are AMAZING people and I adore the strength they have. I hope every one enjoys each embrace, each breathe, each smile, and each and every day. God Bless!

some fun in the forecast

So my last clinic appointment was so GREAT! Things were all improved! My PFTs were 2.48L (again, 3 is my predicted) so it was a HUGE improvement. I think exercise has really helped. Also, my weight has been stable for over 3 weeks now =) There wasn't any changes to meds or anything dramatic. I just need to keep drinking....Predinsone is still a pain, I'm a fuzzy gorilla! lol...at least its blonde fuzz, right?
We also had a great day trip with the newlyweded Smiths. We enjoyed St.Augustine's St.George St. for the first time since I had gotten sick...Last time I was there I needed a motorized chair-which almost killed me-but thats another story. This time, I walked it with all smiles =) We then went to Aunt Kate's on the water (yummy!) and then played some Putt-Putt. I learned yet again I'm not the most athletic with a whooping +18 LOL...but I had a BLAST!!!
Also, we started Sarge in classes to be a Pet Therapy dog. He's doing great so far, and did really well at the West Muttster (a local dog fair). Henry did good too, minus the fact that he wants to jump on all dogs-no matter how big they are. Saturday is Sarge's first visit to a facitily, I think he'll be fine but I'm more nervous then him! He knows the medical equipment and all that, he's used to it on me, so we'll see how he does....
AND- the biggest thing of all is the Turkey Trott on Thanksgiving...What big day thanksgiving is to me this year. In 2001 I marched in the Macy's parade, only to get sick and never really bounce back 100%, this year-9 years later-I have new lungs and SO much to be thankful for. I didn't think last year that I would get to see Turkey day this year, but because of a selfless family, I will. I'm going to do the trott in hopes of completing it-not racing it-but finishing for my donor. Drag me across the line if you have to! And the coolest thing of all is my BFF growing my in SoFlo will be coming that weekend! I haven't seen her since I got hitched...I got a lot to look forward to, and I'm thankful for it!

Rumba Zumba!

So the past few weeks I've begun some training for this Turkey Trot 5K on Thanksgiving morning. Training is great- I feel awesome afterwards! But getting me to do it is hard. My body is lazy, but my lungs could go all day. I always am so grateful afterward that I did it, why can't I just be eager to start it? Jon trys to push me, but he doesn't like the exercise so much anymore lol. So last night, I went with a friend, Hope to try Zumba for the first time. I drove to Ocala very nervous this was going to be like latin's dancing franticly around me while I stood there lost and confused! But to my surprise, it wasn't. Everyone tried following the instructor, and if you couldn't you just shook your booty! It was a LOT of fun! I was reminded to of why my dancing career never took off lol- Arms alone are okay, Legs alone are okay-but if you want them both involved you can forget it! So now Jon and I are looking into this gym here locally that would offer cardio 4 days a week and Zumba once a week. I think having a class schdule helps motivate me too.
As for my health, things have been pretty good. I kind of hurt my tummy the other day doing sit ups, but I think I'm on the mends. I have a clinic appointment on the 10th, so hopefully things will be okay. My mind had come back since the last blog, since I was able to start the original med again. No more nervousness and no more panic attacks. Still having memory issues, but I'm learning how to cope with those (post its and note pads eveywhere). They even kept my changed meds the same until I see them again. So hopefully thats a good sign. At the end of the month I have a bronch-which if that comes back with good results I can then taper down on the Prednisone some more (PLEASE let it be good!)..Puffy face stinks, especially when you can't predict it or control it. The puffy feet are getting better and my sugars are on slight incline. Weight is good and stable (I'm buff cakes now haha). Oh, I have to share this moment with you:
At Zumba we were warming up, doing poses a lot like yoga. Breathe in. Hold it. Release. Well After the first deep breath in I got nervous and was like "Oh no, I won't be able to hold it long enough for the release". But I did! I held it and I wasn't about to pop either! It was amazing! My PFT's are now at the 2.29 range and I'm predicted to reach 3.0. Its so exciting...and I'm so grateful!

Don't get lost

I want to warn readers: YOU MAY GET LOST! My mind is racing, and it is probley not the best time to try and write. BUT, it is the only down time I have and I'll take advandtage of it.
The past week has been very stressful. Not only had I been told of the Aspergillous, but my new anti-anxiety med has made my anxiety worse! I couldn't sleep or finish a task without getting worried something was getting in the way or tripping me up. I'd walk in a room to hang clothes and see that the bathroom sink had streaks and would have to drop everything to clean it...leaving the laundry on the bed, waiting to go be hung. Then, go into the kitchen to get the Lysol to clean the sink and see there was a dish in the sink. Danger! I have to put it away immediately! Then, I touched the dishwasher-must wipe that down with Lysol too. Ok, back to the bedroom to hang the clothes. Uh-oh- Dogs need to go out, I'll let them out then finish clothes. Come back to clothes and finish hanging them only to realize I didn't swap laundy. Now the closet needs to be organized. The house cannot get clean enough. No matter what I do, the germs are surrounding me.
BUT According to one doc, this is not OCD. Though I was diagnosed a while ago. When I was on the EXR, my mind took a break-this had to be related to the drug switch.
So I went to the doc on Thursday, he instructed me to stop cold turkey. Which I was kind of glad of since I was getting lost in my own house. I got lost in the parking lot at Walmart-really lost. I had a panick attack and then like magic I realized where I was. This has to be the most scary mental state to be in. Every road sign and turn that should be familiar, doesn't look familiar until I'm a mile away. I double and triple check the locks in the house, make sure the air is turned up where it needs to be and wipe the counters and doorknobs continuously.I'm trapped! Not only this, but any little thing will make me cry. That new Taylor Swift song about the guy being the best thing thats ever been her's-bawl everytime!!! Vacuum broke-cried. Couldn't find my tweezers-cried. Jon didn't put the dishes away the "right" way-bawled. I'm an emotional basket case lol
Now I've been off the "new" drug for 6 days and I'm able to catch myself. If I stop, relax, and think things through I can get through the day. Even yoga is distracting me (on the hardwood floor at eye level its amazing the dirt and hair you see)! That day at clinic was so annoying too because the doctor said "maybe your not doing enough exercise". I could have screamed! I find EVERY possible way to exercise and get my heartrate up every day-several times a day. Granted I may smell like a pig farm from sweating with everythimg I do....but I'm on a mission damnit!
HAHAHA got to throw in my random thought. I'm sitting here at Panera (in an undisclosed Tampa location) and a man sat next to me about 5 minutes ago. Well, the doctor calls to discuss my poop. How do you discribe poo without knowing what I'm talking about! lol Too funny.
Ok, mind is going on a loop again (if it ever got off)-going to wrap up paperwork for my ENT appointment, which I'm really excited about!

The Fungus Among Us

Unknown to me, when writing my last post I hadn't had all the facts yet. I got a call about two days later from clinic telling me they had some bad news. My cultures showed I was growing Aspergillous in my lungs. Gross. Scary. Get. It. Out.
Turns out it is treatable, and other then clinic telling me I have it, I would never know. The symptoms are the same as the side effects of all my other medication. Slight cough and fatigue. I also was shocked to learn out of the 6 high risk factors-I had 4: transplant patient, Cystic Fibrosis, Immune Compromised, and on steroids. Nice little bit of info I wish I had known about. But hindsight is 20/20, and I still would've gone through transplant.
Now the next issue came with trying to get the prescription needed to treat it. Since its a pretty powerful drug, and I need at least 90 day treatment, insurance wanted prior authorization. I'm the lucky one, however, who always get tangled in the system. Insurance sent the wrong form to be filled out, leading to the wrong form being sent back saying it was missing information, and again that same wrong form being sent back with all the information. This morning I called a Patient Care Coordinator's number at the insurance company, she actually was helpful, and it seems now the ball is rolling.
I have developed some new goals overnight too. We went to good friends H and K's wedding rehearsal last night, and H and another friend of hers J, talked me into starting to go to the gym with them. Not only that, J is running in a 5K on Thanksgiving and I thought what a better way to give thanks to my donor than to take our lungs for a trot. I'm real excited! I just need to build up some more-and walking is allowed =) Its just nice that breathing wouldn't be the issue.
More big news, if you don't know me too well I have a few fears. One of them is fish. Yes, fish. I've heard it all before "they won't hurt you", "seriously, they're more afraid of you", and my favorite "just jump in". I can't tell you how NOT easy getting over this is. But I made a list of things I MUST do post transplant to fully feel like I'm making the best of this life, and swimming with those slimy creatures was on the list.
So Saturday, my parents and in-laws and Jon and I all met at the springs. I really did not think I was going to even attempt it-even more so once I saw the size of the mullet in the water. They looked like mini-sharks to me! One reason I was so pushy towards myself though was that before transplant, swimming was scary. Holding my breath was scary. The thought of drowning-imminent. But on 10/9/10 I decided enough was enough. I put on my snorkel and mask, then closed my eyes, and about 30 minutes of coddling the steps-jumped in! Cold? yeah. Scary? BEYOND! Of course as soon as I looked down there was a happy lil fish staring at me-and I screamed. Jon scared him off and proceeded to push my tube(my body was in the water) and my MIL went in front of me to scare whatever fish may be there. We actually made it up the middle and sides of the spring. I even swam over the spring myself =) It was scary, and I admit I did have a panic attack at one point, but I did it! I was very proud of myself, and I think I may be able to get to a point where one day I'm completely over the fear.
As for now, its way past lunchtime and my belly is reminding me. I hope each and everyone you gets to face a fear and set a new goal...because its an amazing feeling!

Quaqmire

Ever feel like your life is a cartoon? I'm starting too. I woke up one day, about September 20th, feeling very very itchy. My face felt like I had a bunch of cotton balls stuffed inside so tight I could barely smile. When Jon woke up shortly after me, his look said it all. I ran to the bathroom mirror to see my face looked just like Quaqmire's!!! I immediately thought I was having an allergic reaction to something, but nothing had changed medication or food wise. I had been on a new cottage cheese kick for about a week before-so no way those little curds were just now showing their evil side. Then I thought it was my kidneys. Was I retaining fluid? The swelling wasn't pitted (meaning if I pushed on it it didn't stay that way). So before I called clinic, I called my Mom.
She said she thought it was the Prednisone, to watch the swelling, and drink a lot of fluids. So I did, and the swelling went down real quick. Then, about 5 days later, after having a few days of random swollen feet, my feet got HUGE after eating and playing at the playground with my little cousin. This time, the pain was a little ridiculous-it felt like I had fire ants on my feet. My cheeks were sore, but not as bad as they have gotten since.I find my cheeks puffing up at odd times-when I'm hot, nervous, or eat anything! They swell so much, I can barely see out of my eyes. Jon says it doesn't look as bad as I think, but he's my husband-they signed a contract to make us feel beautiful. So now, I have puffy cheeks and feet, and now my hands want to start in on the fun!
After talking to clinic, my blood work was awesome (meaning kidneys okay) and my bronchoscopy came back good as well (meaning I can taper down the Predinosone). This is FABULOUS news because I truly believe that little devil of a pill is the problem. Though it took 3 months to show its true colors, it has been working for me obvioulsy, since the lungs appear to be okay.
My only wish now, is that I don't feel so uncomfortable in my body. I knew body changes were coming, just as they had when I got sick. But this is getting hard to deal with at times. Crowds seem to be staring, just as when I was on oxygen and in a wheelchair. Food seems to be an issue again, can't over eat or my stomach will hurt, but need to gain weight. And my clothes still don't fit, either they are too big or too small. I suppose when you say "Yes, I want to breathe like everyone else", you also say "I know I'm trading one set of issues for another". And I'm okay with that-because I love breathing! I just need to get comfortable so I can see people again without feeling the burden of stares they throw.
I also found out I can write a letter to my donor's family. As far as starting that letter, I'm at a block. How do you thank someone for giving you life and taking someone from them? Where do I begin? Thank you is so empty feeling these days. Once I get it going, I'm sure it will be easy- but right now I'm stupified.
Ok ladies and gents, I think thats all for right now...Hope everyone is enjoying this gorgeous Florida weather...and keep praying for those GATORS! =)

...what now?

Since June 19th I have been revved up and ready to go. To go where? I'm not quite sure, but I know I want to get there. Part of that feeling I know is related to medications I'm on and part is due to my personality. The hardest part now, however, is what to do?
I was working as an ultrasound tech only 2 days a week before I got my transplant, but it was more than not working at all. And now, I can't work at all for at least 3 months. Even then, it will be hard because I'll lose my Medicaid. And I know I would never earn enough just to cover co-pays without it. My healthcare coverage has become my priority, not going out and living. Every choice I make now has to go back to "what if I lose coverage". Granted, I would do transplant all over again, and it seems like a minor interference compared to not breathing-but it is hard to deal with.
I have felt so darn isolated since I can't work and don't live near anyone. People also have been going on living, doing things- I feel I'm missing out on. Again, I'm grateful to be here and be alive-but it is human nature to compare yourself to others. I know of at least 7 girls who are pregnant and expecting little bundles of joy. Plus 2 who just had them! I won't know that excitement. I'm not going to lie, I'm jealous. Jon and I were talking about this the other day, and when I say it out loud I realize I have been given a life-my own. Plus, my dogs are always a treasure =) I think any woman though would understand what I mean. I've been blessed that Jon is okay with what happens one way or another-he just wants me to be healthy and happy. Plus, right now I think he kind of enjoys not having ANOTHER person to care for.
On another note, I had clinic on Monday. This was an adventure! I think it was the nurse's first day-EVER! She seemed very lost and confused by almost everything I said. Since I felt like I knew the routine, it was almost comical to see her scramble. Everyone there seemed to be new too, and that kind of scared me. Why is everyone either leaving or getting fired? The good news was my numbers seemed stable again. We are adding a calcium channel blocker to lower my diastolic pressure and heart rate and changing my antidepressant. We also increased my AM dose of insulin so I'm not shooting myself up with a million units extra a day. Other than that, I'll have a bronch in 2 weeks and if that is ok I can start tapering down off the steroids! I'm pretty excited about this since I won't be so moody and my face won't be so puffy =)We also got to meet two elderly men who were getting I.V's in the same room, and each got one lung from the same donor. Pretty amazing. They were 2 weeks post-transplant, and the one guy who was 70 didn't look a day past 50! I was impressed! Although he was doing the 'narcotic head bob' and his wife would yell at him and say "Honey, pay attention we need to count how many meds you are on so when they quiz us we know!" LOL I love the elderly!
I think its nap time now, since I couldn't sleep due to a massive headache I had all night last night. I think its related to my evening walks and allergies, but man do I enjoy those walks! Hope everyone has a great rest of the week!

Let the new trend begin

This past weekend was amazing! I had so much going on, yet so much fun even with the lack of sleep. Thursday I had gone back to TGH for labs and to give a petty sputum. I say 'petty' because these days thats what a post-transplant CFer can give. We dropped my goodies off in Tampa and headed home. I was told to call at 12 if I hadn't heard from anyone about the results. So I didn't want to annoy and waited until 12:15 to call. But, I suppose I was early, and still annoying because I was told someone will call me back when they are done with clinic.
Five o'clock rolls around, and the coordinator calls me. Looks like I may be growing MRSA and my Prograf is a little high still. So he decides to call in Zyvock(not sure on spelling) and to lower my Prograf to 1mg in AM/PM. That's good news-maybe I won't be shaking so bad. MRSA isn't such good news, it takes a lot of hardcore antibiotics to kill it-and it wears me out. But we have to watch the sputum to see for sure if it grows anything, pray it doesn't, and start the meds anyway.
Well, sounds all fine and easy...but its 5pm and the Pharmacy says that I need prior authorization from BCBS to get this $18,000 drug. Understandable. But clinic is closed, no doctors there after 5 to sign. I decide the only thing to do is to call clinic first thing Friday AM and have them fax the prior-auth. Well, long story short we go back and forth between pharmacy and clinic, both saying they've done their part but no one really have done anything but point fingers. It's late now, 4:30 and its a holiday weekend. They aren't going to like me Saturday morning. I called urgent line at TGH, they called back in 15 minutes-REALLY? Is that all I had to do? Say that this is urgent? IT'S URGENT! The sooner I start my meds, the sooner I stop the bug! Well, he says there are no docs or people at BCBS during the weekend holiday and I'll have to wait until Tuesday(today) to see what my culture grows and we'll go from there.
BAM-Today, good news! My trip to Tampa was not completely a waste. I hoping to start a new trend beginning today. My Prograf level was good 11.3, my kidneys are recovering, and I DID NOT grow MRSA! It's my normal pseudomonus argenosia, the lovely beast-but not bad! This is the first week I haven't had to change something I'm doing. I'd LOVE to keep that up! I won't hold my breathe-even though I can..*wink wink*
Also, this past weekend was lots of fun. We had Grandpa and Janette come up and visit for Grandpa's big 80! What an achievement! I hope to one day have nearly as many stories and experiences as he does. That night we took them to Sky in Ocala-one of the best Asian Fusion restaurants I have ever been too. We hadn't been in 3 years-and I don't know why! We surprised him with Dustin being there too. It was great! He had been asking about Dust all weekend, and I kept it a secret...ME! I know, I was proud of me too!
Then, we woke up early to head to St.Augustine to see the Kennen family. We all met at Anastasia Island. It was Jon and I, Bob and Cheri, Tracy and Bobby, Brian and Rhonda, Jane, Trey, Regan, Justin and Zack. The weather was perfect. It was overcast but not cold or hot, and the water was just right. Poor Jon got burnt to a crisp...I was REALLY good with my sunscreen. It was hard because I use to be a sunbaby, but since transplant I can't really do that anymore.
This was also a huge day for me. My lungs and I hadn't been to the beach since transplant. And the salt air and my toes in my sand felt so much sweeter this time around. I could smell the salt. I could feel it, like really feel it. It was beautiful..a near religious experience. I pray my donor was there holding my hand, breathing in with me-and feeling my gratefulness for their gift. Soon I hope to know more about this mysterious Angel. Until then, I continue to feel their wind pushing me forward.

Worst Blogger Ever!

Ok, so I promised myself that I would write here at least once a week and at least right after clinic. But I failed! Sorry guys, life has gotten crazy lately.
Last week started off awesome. I was counting the days until my cousin Jenn and the boys would come, then I would go back to Jacksonville with them for a mini-vacay. One of the best parts was on Monday I was able to get my blood drawn locally instead of driving 2 hours for an hour visit, and turn around and come home.
So I did my bloodwork Monday, and cleaned Tuesday in hopes to "baby-proof" the home. That never seems to work however, as I don't find a plug-in air freshner fascinating, but a 18 month old does. The boys are awesome, and it usually takes a few times to remind them not to touch, but they get it in the end. Plus our huge $2 baby gate investment was a great idea! Works for our dogs too...lol.
So Wednesday the gang arrived, and I was really excited, but also worried. I had been tired lately, and couldn't really pinpoint why. As always, we blame it on my doing too much. I let it go. We went to J.J's for dinner that night with Jon, Jenn, and the boys. I also was having a bad BAD case of the Predinsone cranky-ass. The annoying part was I knew I was being ridiculous! I wanted Jon to stay home and finish his 'to-do' list. Selfish of me, because he wasn't feeling his finest either (we've both been super busy this past month-and it continues next). So after dinner we headed home and called it an early night. The next morning I had to finish packing and record a video for my mom's class (...7 times! lol)
This was my first time packing for an overnight trip since transplant-and there was SO VERY MUCH to remember. I had to make sure I had the bottles of meds that they may call me and change, my pillcase, my nebs,neb cups,tubing, and inhaled meds...my BP cuff, my thermometer, my PFT machine, my notebook, my insulin pens(and extra), my insulin needles,lancets, and monitor..oh, and can't forget the test strips. Plenty of antibacterial hand sanitizer, clothes, swimsuit, regular bathroom supplies...The list goes on and on. So sad! I was already a pretty heavy packer-but now, I need a suitcase for my meds only!
Morning came, we packed and headed out! I was really excited to get to Jacksonville! I was going to see my brother's new apartment, go swimming, go shopping, and hang with my family. The best part of it all-it was going to force me to rest, and stop being so OCD at my house. I had lost control! I was cleaning things 5-6 times-in a row! When we got there, I saw my bro's apartment-it was so cute! Perfect for him and his girlfriend...and a little bittersweet, seeing how he's grown into a young adult. We then went to Matt's work to give him the night with the boys so my cousin and I could go shopping sans kids. We got our shop on...for me, regretfully- long story.
By the time we got home, the boys were in bed and I was ready too. Matt had said Will was sounding kind of wheezy, so Jenn went and checked on him. Sure enough, he was more than wheezy-poor baby! He was gasping randomly for air, and when he'd cough he sounded like a barking seal. It was really scary. I immediately thought it sounded like croup. When I was babysitting Paigey years ago, she had gotten it, and I got sick right along with her. Rob stayed home from work that day and took care of us both. So Jenn decided to sleep in Will's room until the morning when we'd take him to the doc immediately. He woke up fine, not really coughing as severly, but a little cranky (I would be too after a night like he had had.)
The doc confirmed-it was Croup. Good. We have a diagnosis, but what do we do? She said a bunch of kids this time of year(due to school starting) are coming in with it, and to start him on a steriod and humidifier. (I told Jenn no way to that, get the nebs which you can sterizle and reuse with out worrying about any bacterias growing when its not in use). Next worry now...me. What am I supposed to do? I've been exposed-very exposed-to this. I was loving on the baby, holding him, kissing him...and now he's sick. I'm scared. I'm trying not to freak out, but I can't help it. One hand, I'm terribly worried about him, and want him to get better so he doesn't have to breathe like that. On the other hand, what if I start to breathe like that? My first time out of town since transplant and now I've got to tell my doctors I've been exposed to Croup. They so are going to think I'm a horrible patient. So I called them, and waited pretty much all afternoon for them to call me back. In the meantime, we went and found Will the cutest nebulizer ever! It was a cow, with a barn bag carrying case! Um, hello, where was the cute stuff when I was little?! Super cute! And he did really, really well with it too. I'm a proud auntie =)
We then decided, since we're waiting, and I'm probley going home early, we should head to Old Navy while we have the chance. Of course, as soon as I get there they call to tell me my worst fear. Yes, I have to go home and to stay away from the baby. UGH! My trip just started, I've already been exposed-this was utterly frustrating!
While waiting for Jon to come get me, we got to go to the pool for a bit and have some fun. Otherwise, I felt like my trip got cut unfairly (to Will and I) short.
When I got home Friday night, I found out I had a funeral to go to early the next morning. George Nash, a.k.a Chief. He was an awesome man. He is the father of Jon's boss, the main man at Nash. I learned a lot about him that day too. How he never graduated 8th grade, then built from the ground up a multi-million dollar contracting company from the floor up. Amazing. When we got home, my dad was almost done cleaning out my garage! I was so happy for this! This is a project I cannot tackle on my own, and Jon will put it off until we move again lol...It looks so nice, I want to hang out in there!
Flashforward to today. My prograf was through the roof, regardless that we've dropped it so many times. My kidneys are taking a hard hit. We've stopped the Lisinopril and the Prograf for now. And I got back for more blood work maybe tomorrow, maybe today. I say maybe today because I just called the doc about another matter. My nose, since yesterday, has not stopped running. Its a typical psuedomonis sinus infection..ya know, the green smelly. And I'm tired damnit. Real real tired. And now I'm frustated because this is NOT the weekend I want to be in the hospital. I have a lot of fun plans coming up. My grandpa is coming Friday, Saturday..and then Sunday we're going to Jax beaches with the Kennen family. I've been so looking forward to this. I'm not in the mood to be trapped in a dark hospital. Remember, I'm supposed to be getting better-not worse! So this is it, every year this time I will be doomed with sinus infections. Grr...Let's see what they call back and say, until then- I'll eat my lunch and pack my bags.
P.S- The doc's just called back, I can wait until tomorrow to see them =) I'm going to start Neo/Afrin and Sudafed, and got to try and give a sputum tomorrow. We'll see what goes down, please keep your fingers crossed that I wake up tomorrow morning and miraculously everything is better =) (fingers and toes that is!)

Clinc Update

I had a clinic appointment yesterday, part of the grind. It was supposed to be the last on the weekly visits, but they screwed up and forgot to give me an IV so I have to go back next week. Then I get to only do every other week for 4 weeks! Wahoo! I was given the okay to drive too, since I'm getting off my patch. I can drive locally only for now, just to make sure I'm okay with it. They also moved some meds arounnd because this darn blood pressure isn't going down. Apparently, last week they failed to notice I was on 2 BP meds that wouldn't really change anything, so now we change it and wait for progress. My diabetes has gotten better under control too, even with me eating as much as I am now. (Finally the appetite is back!I even gained 3lbs since last week!) I take 14 units of Lantus in the morning and 7 units of Lantus at night. And if I feel like eating big, I add 3 of Novalog. Easy enough =) My PFTs were up just a little, because my predicted increased because my weight increased-and my PFTs stayed the same. Kind of confusing, but I get it. They explained this little cough I've had too. I have a weird little birth defect he thinks was irrated during the bronch. Where the bronchi split, I have a little pocket. Perfect for collecting anything. Its very little but its right where the nerves are, so it gets tickled if anything hits it, causing me to cough. I finally after a week actually coughed something up after clinic-I was so freaking excited to get it out-and it felt sooo good afterward!I'm also switch to Colliston instead of Tobi. I think Colli is better, though more expensive, and it helps open my share of costs. Tobi has been used on me foreve, so I was kind of worried that its not as effective. I'm hoping to get the E-flow, because mixing and time is a pain...not so much now, but if I ever go back to work. I'm lucky to have an awesome pharmacist in Tampa, she's been so patient with me and my wonderful insurance issues. LOL So, all in all, clinic went very well.
Afterward, we went to Ocala to get Jon's window switch fixed. He had tried on his own (as most men do) to fix it himself, but had ordered the wrong part twice so I made him go to the dealership. And lucky us, first try, it fit! And we didn't have to pay for labor because Jon switched it himself. Then, we headed back home...
Today we had the cable connected to the guest room finally. I felt so bad having people come stay here and help me, and have a lacklust guestroom. So unwelcoming! After they left, I let the dogs out in the backyard to run. Sarge hates having men other than Jon and my FIL in the house, he needed a run. What I didn't know, is the cable dude left the gate open, and Sarge and Henry got a much needed run-AROUND THE NEIGHBORHOOD! I panicked! It had been a good 5-6 minutes until I had noticed they weren't out there. I jumped in the car and stopped at every person I saw. The kid across the street, he's like 6, took forever telling me this story about how the dog barked at him and ran and the cockerspaniel followed...blah blah blah...HURRY UP KID! So finally, I took off and found them running the street behind our house. If you have ever seen Sarge run, he's about as fast-if not faster-than a greyhound. Henry was in tow. Happy to follow his brother to the end of the earth and back. They both crossed right in front of my car. Thank goodness Henry isn't the brightest, because I called his name and he stopped dead in his tracks, but I truly think Sarge couldn't hear me. I snatched that puppy up and threw him in the car to circle the neighborhood some more. I drove around everywhere, terrified of 2 things-1) Sarge was going to get dehydrated and black out and 2)I'd find him hit by a car in the road. The 2nd scared me the most. He's so fast, and has never been off a leash without us. He doesn't have fear of cars. I don't know what I would have done. Our little family would have been broken.
After searching for about 20 mintues, I had calmed a little and thought, "he's a very very smart dog, he knows where he's fed, maybe he went home". Sure enough, I drive by the house and there he is lying at the front door, tongue out and panting. He saw me pull up and you wouldv'e thought we had been seperated for years. He was crying, I was crying...He jumped in my lap while I was still in the car, hugging me. We were both soooo very happy! I don't think he'll ever go to far again. But if he does, he knows where he lives. Its the cars I worry about.
Anyways, everyone is home safe and sound now...I've got a few more things to do today and then I'm good to relax. And I can't wait-I get to drive to work tomorrow and see everyone! I'm beyond excited about that! Hope everyone's day is nice 'n' easy...with no dog chases!

Quick Update

Just thought I'd fill in so as not to lose the "blogging" routine =) My BP and sugars are down today. I have increased my long acting insulin, so now the frequency of short acting shots are decreasing! And I think the BP is down because I did SO much walking today...I wish I was able to walk around this much during the week, but it is SO hot I feel like my insides are cooking through the bottom of my sneakers! Happy too, because I realized that I went over 2 days without my pain patch (Fentynal) and had only used the oral meds 2 times then. Pretty cool! Anyhow, we have a LOT to do tomorrow, and I don't feel like sleep is going to be good tonight because I've been so wound up all day. Hope everyone is enjoying their weekend with someone they love, doing what they love, and breathing as nicely as I am.

PS-Please pray for two people tonight. One is my old neighbor's friend, who is 9 today. At his birthday party he had a seizure while swimming and was unconcious for 10 minutes. We pray he makes a full recovery, though no one knows now. And the second is very special to me-My mom's best friend, and like an aunt to me, Jean. Her boyfriend was found unconcious this morning on a popular biking trail. No one knows how long he was there or what had happened. He's in the ICU/Trauma unit right now being worked up. Pray for Jean and him, as she has found happiness in him, and what makes her happy makes me happy. He has not had it easy these past few months, and she's been his rock. My mom's as well when I was sick. So now, pray for her to have courage and strength and feel love through this endeavour. I love you Jean!! XOXO

My Island

Today has been kind of a bummer. Do not get me wrong, finding out yesterday that I didn't have any rejection was AWESOME news! But..today, I don't know if I'm experience survivor's guilt, or loneliness, or just too much time on my hands. I feel like I'm stuck on a island.
This island consists of TV, my bed, and my two dogs. It is way too hot outside to exercise or walk the dogs, and I'm beyond sick of TV...My dogs are fun, but guess what-I'm a clean freak...so as much fun as we have, I end up cleaning it all up after.
I clean as much as I'm allowed to(with my mask on, please don't panic) and I never reach or lift if I cannot or think its too much. I've gotten extra careful since the wire in my chest poking through is a consistant reminder of the fact that I've just had invasive surgery almost 7 weeks ago. I've also filed everything there could be to filed, I've made multiple checklists and completed all of them. Now what?
I cannot drive, and everyone I know works all day (like I wish I could) so no one is around to come over. And I feel awful saying "come over-play with me" lol...So I'm stuck on my island, waiting for Jon to get home. The driving issue I'm hoping will resolve real soon, as I've been down to taking my pain med once a day (wahoo!) and just using the Fentynal patch. I'm scared to give it up though. Really scared. If I give that up and I hurt, then I switch to meds, then I'll get stopped up, then I get the stomachaches-which means laxtives. See, I told you I have a pill to run all mechanical operations of my body! =)
I don't dare say I'm depressed, or don't feel loved. Because if anything its opposite. I'm so loved, and the only down side to the ones I love (or me-depending on how you look at it) is that I live VERY far away from them. It stinks. I don't miss Gainesville, I miss the people. I love Leesburg...and I love the people I've made friends with here-but I don't see them like I'd like too.
And my donor family. I'm having trouble coming to terms with some issues in a different way then I think most transplant patients do. I can't ever imagine that these lungs weren't mine. Yet I know they were someone else's. They helped someone else say "I love you" to someone, but I cannot connect it that way. And I feel guilty for not feeling more sadness for the donor. I do truly feel pain for the family, I've lost so many friends and family-I know how it hurts. And in a way, I think that the donor is okay now, so its ok not to feel too much. That the donor would prefer to not be the way they were before. Yet, I'm guessing-I know absoultely nothing of them. I almost wish I knew them before. I want to know what they liked, hated, did for fun. Did they have brothers and sisters? How old were they? What was their favorite food? Maybe I don't need to know that stuff too, because this is the next journey in the lung's life. This is where God feels they belong now. And as I've said before, and I mean with all my heart, is that I will do my best to carry the honor of the donor and try and make them and his/her family proud. I will do what ever it takes, I want them to know I am grateful.
I apologize for the rambling, but my thoughts have gotten so jumbled, because I'm not sure what I think anymore. I know I'm grateful. I know I love the donor family and my donor. I know I want to live life as much and great as possible. And I know I can love deeply and I know I'm ready to give it all.
This weekend is busy, which I love since my weekdays are a bore usually. Maybe getting some air and time with my hubby will help my mind calm down a bit. Until then, I'm going to go do a little praying, play with the dogs, and wait for my knight-in-shining armor to come give me a hug =)
PS-A few hours after writing this, I realized I was 2 days late on changing my Fentynal patch!! I also have only been taking my pain pill once a day since...Guess I'm doing better than I thought! WAHHHOOOO

I'm back-for real this time

Whoa! It has been forever since I've blogged, and so much has been going on. I've been home now since July 18th (the day after the golf tournament-which raised over $10,000). It has been so nice being able to sleep in my bed, eat my food, and play with my dogs. Little things have made me extraordinarily happy (i.e-getting to vaccum for the first time). LOL! My health has been surprising me everyday.
There are 2 numbers a C.F patients is told to focus on when we do our Pulmonary Functions Test (PFT)- the FEV1 and the FVC. The FVC represents the total amount you can blow out after the biggest breath in you can take. And the FEV1 (which is my favorite to watch) is the amount you can blow out in the first second of your FVC. This is measured by blowing into a spirometer and measured in liters. Ok, now that the lesson is over I can tell you that when I was pre-transplant, my FEV1 was only 0.21 L, pretty much how much oxygen capacity I had. Not even a liter. Then as of Tuesday when I did my PFTs again at the hospital, 6 weeks and 3 days later, I am at 1.97 L. AMAZING! Before transplant, I would dread PFTs because I would work so hard blowing out, and then cough up and be sore from it, only to produce incredibly low numbers. Now when I do PFTs, even when I feel I'm working hard, I'm not exhausted, I don't hurt and my numbers get higher every day! I still do breathing treatments everyday, and I have breathing exercise I do to expand the lungs muscle. I can't wait to see how far I can go!
Another thing I had done on Tuesday was a bronchoscopy. Doctor take a camera attached to the end of tube and looks around, then he takes a small piece of the lung to biopsy for rejection/infection. We're still waiting on results from that. My numbers from bloodwork seemed decent however, and the only adjustment made could be my blood pressure meds. That has been my newest battle. It is always high. I'm talking 140/100 and up! So we have been moving the meds around and hoping for a change soon. And I think the diabetes is starting to get undercontrol after several insulin adjustments, but I'm on it like a hawk. Sometimes I think I may be annoying because I am so insistant with getting the sugars under control and getting off a sliding scale, but I don't want to have to face kidney damage on top of everything else. One challenge that has been driving me nutso is I can't drive yet! Not until I'm off the pain meds (which each day is less and less). And I finally got the okay to go in the pool or bath (but no swimming-still healing inside).
One really nice thing about transplant is that I have seen the people in my life I really want around me. And everyone has been there that I've expected, and some that I haven't. I only wish I could drive to visit everyone, I'm just so darn far! I have to wait for Jon to get home in the evenings to go anywhere, or when I have a friend or family member come by. By the way, I love having my vistors =) It definately makes the day so much happier. It gets a little lonely, and I think my house is almost at it's maximum cleanliness!LOL
So, I apologize for putting you to the side my loving blogger-but I promise to return way more frequently, as my mind is a running like a hamster wheel these days and I got to spit it out somewhere!

Surgey...once again!

So yesterday was my Nisan procedure. But the day before I began the prep. That was SO not fun.I tried to do the full prep requirements, which includes drinking a bottle of Magnesium Citrate (i.e-liquid saline laxative) and an Enema. Well I did good- I drank 3/4of the Mag, but then that was it. It came right out the top. So of course, my first thought is that I couldv'e aspirated. So they stopped having me drink immediately. The next step was the Enema. I told them my Enema history of vommitting then too. (I'm so lady-like). So they called the surgeon to ask if it was ok that I don't do the Enema...but it wasn't. And I had a feeling it wouldn't be. Thank goodness, once again, my Mom was to the rescue! She gave it to me instead of a nurse to save me some humiliation. It worked, but I had to do 2 because I wasn't as empty as they wanted. All the while, I'm nervous thinking about the surgery and the risks-some of which I felt weren't complete expressed until the night before. Risks included: perfertion of stomach, bowel leaking which can cause me to go toxic, excess gas causing the need for a chest tube, and aspiration into lungs. So scary! Of course I adore my new lungs...I don't want to ruin them. So these risks, as scary as they sound, had to outweigh the risk of aspirating into my new babies. After a few cries, I was reassured several times by the docs,nurses, and a new CF friend, Emily that things would be fine. I began to feel a little better in the morning.
Jon and Mom were trying to be comforting, but I was so wound up nothing they said was working. So I whipped out the coloring book and colored until the came and got me. Nothing quite like art therapy! We went down stairs (or up?) and thye wheeled my bed right into the O.R....I was not expecting that! I thought I was going to a pre-op holding area. Instead, wide awake with no glasses I was brought into the O.R room. I actually was a little more calm when I saw Dr.Rosemurgy and Dr.Shah. In the OR, usually the nurses are the ones who try to reassure you and keep you calm and tell you everything will be ok-but not this time. Dr. R and Dr.S did it all. Dr. S was very very kind and promised me he would take the best of care of me. And they did.
When I woke up in recovery I was in so much pain I started crying out! I didn't even feel that much pain after lung transplant! The worst part was I was asking for a nurse..and I was basically tucked in a corner without my glass and in pain, and no one could hear me for what felt like 5 mintues. Finally when the nurse came she asked if I was in pain?! I wanted to tell her "no I'm crying because I LIKE this!" Sheeh! Well apparently they were giving me Morphine the whole time, but it was not working at all. So they gave me Diloted instead- and it took the edge off..but not enough! When I got back to the room I started crying because it hurt so bad. Stupid move, because then crying hurt lol...I was screwed! Then, just as I was promised, the CO2 that's released when the stomach is operated on went straight to my shoulders and neck. That made sleeping in a comfortable postion nearly impossible. They also had taking my Fentynal patch away-which I had been with since June 19th! So pain was unbareable. They called and upped the dose and gave me a happy button. But to be honest I don't think ANY pain meds would have helped. Funny thing, the incision is in my belly button-super tiny-but the insides that got cut up were still very much alive and in pain. Dr.R even gave me extra Lidocaine inside in hopes that it would be ok, but it didn't last that long. So last night, due to the pain meds, when I'd have to pee I woke up in almost a panic attack. The first time, I literally jumped out of bed, unplugged, untangled, and disconnected everything and RAN to the restroom...it wasn't until I went to go back to bed that I realized "oh yeah-I'm hurting!" So getting in bed was awful. Mom didn't wake then either-funny because I even had the bright light on! Well, this "emergency bathroom breaks" lasted all night..every 1 1/2 hrs. So it was a restless night. Since Wednesday I've been on a clear liquid diet, plus contiunous I.V. fluids...so go figure I loved the potty! I think we guessed I put out about 2,000 ml over night! Sucked!
Anyway, today started rough-pain was still pretty intense. When Dr.Rolfe came by I told him, and of course I got teary eyed (damn Predinsone,Pain, and no sleep). And he kindly raised my dose of Diloted. After getting that, and my Fentyal patch back I'm finally able to get up and down without screaming. But I'm trying to ween off the pain pump so that I go potty (#2) and make the docs happy enough to where I can go home. Surgeon already said he doesn't need to keep me here anymore and I'll see him in a week whether its here or coming from home (I'm hoping the latter). Dr.Rolfe is waiting/wanting to get me home. So today I started back on clear liquids (after being NPO since Wednesday night). This means no pills by mouth...which also means if it doesn't come in IV form, or can be crushed, then I have to drink it. UGHHGHHHGHG So, I felt like I was on tube feed all over again. Good things is I don't feel hungry because of the bloating from surgery. I just had to drink these 2 things and let me tell you! It burned like fire going down my throat..so hopefully once this passes I'll be peachy. Fingers crossed for a bowel movement so I can go home!
And to anyone who is going to the Golf Tournament tomorrow- THANK YOU THANK YOU THANK YOU! I wish I could be there to show you the amazing difference and how excited I am to be able to have a beautiful 2nd chance at life. I hope you all have a blast, wear sunscreen, win some prizes! =) LOVE YA GUYS!

Ready for home

So I had my teaser at home...and now I want it back! LOL This weekend is the Golf Tournament too, but I don't think I'll be making an appearence. I have the Nisan surgery tomorrow (or at least thats the rumor) but then they like to keep me on antibiotics for a day or two after and make sure everything is ok. The surgeon seems awesome-I've been impressed with every doctor I've met here, which is relieving.
So as I sit here, I think about all the things I want to do..and I know I have to "recover" fully to do them...but man I'm antsy. Never in my life have I been able to breathe this easy. My muscles in my legs however, are still very shaky. I lost a lot of muscle mass and weight from all this. I think once the GERD is under control and I'm fully healed I'll be able to get back to a healthy weight. I don't look sickly, but clothes don't fit =( I worry now about the house...I usually ran it when I was home, but I've been gone 3 weeks-and Jon doesn't handle that stuff well, plus he's stressed with me being going through all of this. I'm keeping my fingers crossed its not too horrible when I get back. We had a lot of help from our families getting things cleaned (not that we're messy-in fact, were super clean but we have 2 dogs).I miss those doggies too, especially Henry! He's only 8 months and I want to bond with him.Sarge I know has missed me because when I was home he wouldn't leave my ankles. He was always by my side before transplant when I was sick, he is a very intuitive dog. He would get Jon if I was calling him from another room, or sit in the bathroom next to me while I hugged the toliet. He's a special dog, he needs us like we need him. Henry on the other hand- he just needs anybody...belly rubs are his best friend, and he loves being held. Jon says he's calmed down a lot. He is a hyper puppy and always picks on Sarge (poor kid). Anyhow, I'll stop rambling on..
I wanted to say thank you. To those who showed up for the transplant and waited those painful 6 or 7 hours. How boring! But knowing I had support out there helped. And when I was on the vent and Dad and Jon told me who all was there, I was touched. Honored. I only wish I could have visited with everyone. How far everyone had to come and everything-it means a lot. I had no idea that I was out for a day and a half-kind of weird they can do that to someone right? My body now is slowly but surely waking up...little things like coughing, going to the bathroom,eating...it all had to be kind of "woken up". I'm on a LOT of medications right now to make my body run.I've got stuff to control my bowels, my sugars, my everything-its crazy. I have a cup full of meds every morning! The good news is at home I don't take nearly as much. It is almost the same as what I was taking before, just different meds.The hardest part about being in the hospital? Not being able to see people I know, being far from home, not being able to take care of the house. And I miss work! I think later today I'll walk down to the water again...even though its so hot, I never see water where I live (minus the lakes). I guess that's a nice part of being in Tampa lol..I have a view of the bay from my room, with skyscrapers too- feel like I'm in the big city haha! Cool thing that happened the other day, Jon was here and he told this joke (I won't repeat b/c it was kind of rude) but I was laughing so hard..LAUGHING! no coughing! I loved it..it still kind of sore, so that part hurt but to laugh like that...it was beautiful. I wish all my Cystic Fibrosis friends get the chance to do that. Nothing like laughter =)

My Gift

June 19th @ 7:23A.M- I was getting ready to head to breakfast with Jon and the in-laws to celebrate early fathers day, then head to Jacksonville to see my cousins before they left town for a month. I was so excited about the day because we were going to the pool in Jax and I had been dying to get to a pool. But I got the call. I saw a Tampa number and realized that on a Saturday it must be "the call". It seemed surreal. It had only been 5 weeks and 6 days. I was told it could take up to a year! Oh well, we started throwing things in the bags and making calls all the way to Tampa. Everyone was excited and panicky...I was just ready and waiting to see if this was a false alarm or the real deal.
When we got to TGH all I kept asking was "has there been visualization?" Meaning, has the surgeon seen the donor lungs, and are they a match for me or not. No one knew until minutes before wheeling me into the O.R. My mother in law and father in law and parents arrived to see me before pre-op. I had some nebs to do, EKG, blood work, x-rays. I was even left in x-ray for awhile and got worried they forgot me! Turns out they sent transport on a wild goose hunt for me!I was waiting down there for transport and no one was coming and I kept worrying they were going to make the new lungs go bad because I was MIA! LOL...Finally they found me and brought me to pre-op. I didn't realize then, but I didn't have a lot of time for lovey dovey emotional goodbyes. I had people around me at all times-head to toe-hooking me up everywhere. We gave the O.R. nurses my camera to take the pics of the old and new lungs because I was real curious how bad my old ones would look, and how special the new ones would be. The nurses, and surgeon were so kind...encouraging...and really comforted my family, which comforted me. Literally 5 minutes before, Ginger peeks her head in and says "They're good!" That's when we all cheered! I got excited! I was ready...this was awesome! Not once did I think about not waking up, or dangers, or anything-I completely trusted this team and I was ready to breath!I actually remember being transferred from gurney to operating table with what seemed like 20 people rushing around me. It went pretty quick once I was out lol....
I woke up 2 days later to my father and husband looking down at me. I'm not sure if I was still intubated or not, but I remember Jon and Dad telling me how proud they were of me and that it was Monday and Sarge and Henry actually held their potty break 8hrs past their normal time. Jon said I tried to react too much and they had to put me back out. Go figure I would want to talk right away lol...I remember seeing Grandpa and Janette, and Bob and Cheri looking at me through a glass door...a lot of times people were crying. I hope only happy tears...because though I was uncomfortable-I was happy. Jon showed me pics of the new and old lungs. He said I started crying when I saw the old ones, so he took the pics away. They were black though-it was scary. I couldn't look at a piece of the old lung and see where air was going through at all. The docs later confessed that I was pretty bad off and may have not made it another 6 months-and I was the worst case of hypertrophic pulmonary osteoarthritis they had every seen. Scary. But my new lungs were beautiful. White, crisp clean edges, full. Like true angel wings. They look brand new.
So I spent 2 days on the vent, day 3 I was up and doing exercises at 15 and 20 minutes, and day 4 moved to a normal transplant floor. Once the chest tubes were out and my new lungs had some room to expand things got more comfortable. Although, there was a little pain I truly expected it to be a lot worse. I also expected to feel a lot weaker. Everyone (nurses,docs, family..) all seemed extremely impressed with my progress. On day 4 I was walking the halls. I skipped a crucial part!-coming off the vent.
I woke up to Dr.Haddad at the end of my bed in a chair saying "Ashley, you need to breathe. If you don't I'm putting the tube back in there." He was so calm I almost didn't understand what he was saying. I couldn't feel myself breathe. When I did, I made a horrible gurgle noise. It scared me...I was thinking I traded one set of junky lungs where I could cough stuff up to another set where I couldn't..Very much not what I wanted! After a bronch and some suctioning, and few days to give the vocal cords a rest I could feel some air in there! =) I was able to talk without the gurgle...and sit up for longer periods of time. I had to stay in here for 13 days. We were going to shoot to have the Nisan surgery 4th of July...BUT docs need their vacays too and wouldn't be back until after the holiday, so my docs said I could go home and schedule for a Bravo study and the surgery in a week or so and enjoy sometime at home. Real quick I'll explain the Bravo and Nisan. The Bravo pH study is where you swallow a pill attached to a thin tube that clamps to the inside of your throat. The pill stays and the tube is removed. All while your awake. The pill will measure the pH levels and severity of the GERD/reflux I have. Once this study says that it is severe I can have this Nisan procedure done. For the Nisan, they go in laparoscopically and put a band at the bottom of my esophagus so that I don't reflux and aspirate into my new lungs. They also have to move my stomach back above my diaphram so that the stomach will no longer have pressure on it, causing me to reflux/vomit. Until this can be done, I need to be upright pretty much at all times.
So I went home for 3 days, enjoyed my bed, my dogs, and a trip to the store...On Tuesday I had to come back to TGH to get the Bravo placed and get some blood drawn. We had to leave at 4am to be at Tampa by 6am, had my blood drawn and Bravo done and was home by 10:30..just about to lay down for a nap and we got a call from Tampa. My white blood cell count was 31,000...they like 10,000. I had to come back immediately for antibiotics. Now, the day before I was slightly tired, but of course I thought I was overdoing it like I always do..but maybe I was sick? My PFTs were going up, the only thing shaky was my weight-and it was expected because I was on 24hr tube feeds for 2 weeks. I had to adjust switching to real food in just a few days, my stomach had shrunk. When we turned around and got to TGH, Dr. Haddad looked kind of worried. He asked what I did, why was I not feeling awful? I had no clue-I felt fine-just tired because I woke up at 3 am (who wouldn't be!)..He then decided maybe it was a false positive, but was going to start me on antibiotics anyways and keep me here just so he could keep an eye on me until surgery. So- here I am- I turned in the Bravo this morning. I should get results tomorrow or Saturday, then we schedule the surgery. As of now, my lungs are "perfect", and they don't know why the WBC was high, but my RBC is low so I had to get a shot of Procrit (think this is norm though). They also are checking my stool for C.Diff, but I'm pretty confident its not that, because the diarrhea is gone, and I wasn't really hurting from it. I'll admit, this has been a LOT easier stay than most...no tubes out of my chest means I can lay on my side...and I can get out of bed a heck of a lot easier. But I miss people..sleeping regular hours, having dinner done and the house clean when Jon comes home...getting Dr.Pepper ICEES..but I LOVE breathing...I LOVE it...I'm already almost at 2 liters on day 18...and its getting better. My family has been better than ever and life has been more beautiful than imagined. I thank God, my donor, and my donor's family for giving my family and I a chance to be together-healthy. God is good, my doctors were made in His eyes and given His hands to help heal me. Every chance at bad that could have, maybe did, go wrong was corrected to a better standard than what was originally intended and for this I am eternally grateful. Thank you is not enough- I will live my life for myself, and now my donor. I want their family to be honored and my Angel to feel blessed that I am carrying their legacy on.

New lungs

Jenn here again...
this morning we are headed back to the hospital in hopes/expectation that we will see Ashley taken off the ventilator today and taking her first breath. This is the first breath with her new lungs and the first breath of her new life. A new life that she has fought, pilaged and worked for! Her family, her parents, her brother, her friends and most of all you have fought along side her. What an amazing person to fulfill this amazing life!

New lungs

The surgeon came in. Ashleys new lungs are in and she did GREAT! We will see her through the glass soon. Love you cousin!

New lungs

Ashley is getting her new lungs today!!!!!! She got the call around 7:30 this morning and immediatley went to Tampa. They checked in and got prepped and ready and were in the OR before the surgeon had visualization. At 1:45ish he gave the lungs the green light and she began her surgery. I will update more when shec omes out. It is about an 11 hr surgery so hopefully by 12:30 am she is in recovery.

Some Thoughts

So a lot has been going on...even though nothing has been going on. LOL Makes no sense right? Well last week we had a visit from some old friends, Sue and Jim, they were down here for our friend's wedding. It was so nice to have the whole Courtney Villages group together again. We went Thursday to the pool and had some BBQ like the good ole days. One thing was different though....I was on oxygen.
I don't know how or what people feel exactly when they see me with it for the first time. It was the first time Sue, Kristen,Zach, Jen, JP, Maddy, Jim...sheesh...a lot of people had to see me with it for the first time. When you don't see someone everyday, they don't see those changes. Anyways, I feel a sense of "lets not talk about it because I don't want to hurt you" in the air. I don't mind talking about it. I'm not bothered by it at all. Anyways, Maddy did it the best...She's 6 or 7. She goes "Whats that on your face?" and I said "Its oxygen...it helps me breathe." She then replies, "oh, ok...can I have some of your ICEE?" and continues to run off with it. She accepted it, didn't care, still loved me just the same. I guess thats why they didn't say anything to me...because they still love me just the same. God knows, I still love that gang!!
Also, watching Jen and J.P. get married was so nice. She was a beautiful bride. The hardest part was not being able to dance at the recepetion. I miss that. I had to watch everyone else boogie down and I was jealous..Then, when she walked down the aisle, I had to make a conscience effort to not be pulled back into my chair by the O2 cord when jumping up. That kind of stuff is a bummer-a rude reminder of how bad my health is. I used to dance until 2 A.M. without stopping. Now, I need to make sure I have enough O2 in my tank to even make it home. At the time of dance we were almost 3 hrs in to the whole day, and my tank only goes about 4hrs. Plus, I turned it up because I was so darn excited and it was HOT!So I miss dancing...but that will come soon enough. Its not like I was a great dancer anyways haha!
Golf Tournament is coming up, and the Yard Sale...I'm getting excited just because I'm a social butterfly and I can't wait to meet new people hahah Raising money will come in time. The IPAD drawing was a huge success thanks to my cousin, Jenn, and my mother-in-law Cheri, passing out all the IPAD cards. I think we raised a pretty decent amount. I get so scared thinking of the costs that will come up. Here goes another train of thought....
In Arizona, there is a 27yr old girl with CF who recieves something similar to Florida's Medicaid. Well this fund is running out, and they decided the first cuts should be in transplants. Lung, Kidney w/o pancreas, bone marrow, liver transplants in adults will be no longer paid for. She had finally got listed April 20th, but they have told her if Oct 1st comes around and she has not had her transplant, then they cannot pay which means she will not get the transplant. The ignorance of this is they were qouted as saying "Patients with cystic fibrosis who get a lung transplant might get extra time with a good quality of life, but inevitably the CF will reinfect the new lung." This is very much NOT true!! CF is in the DNA, which the new lungs carry different DNA-hence the reason for anti-rejection meds. Why are these people the ones deciding where the costs are cut. If they don't know the facts then how can they judge. Its terribly sad. I think it bothered me so much because Tiffany and I have very similar stories-we've both lived normal lives and both have had to fight to get our costs covered. I pray she gets her lungs in time. And I can't help but wonder what these people would do had it been their child on the list. Oh, and children can still get transplants...but at 26/27 I think her and I both still have a lot of life to live!

Congrats Lynn (Susan) Fort...you got the IPAD =) I hope you have a blast with it. Thanks goes to everyone who donated and helped spread the word about the fundraiser! We have more coming up (a yard sale and golf tournament). And a BIG thank you to my cousin's family-The Zani's-without them this wouldn't be possible. HUGS!

Sandcastles

Yesterday was slightly rough. I'm usually a pretty tough cookie, I can handle the emotional components of having Cystic Fibrosis. I know the ropes-things aren't always easy, but I take it and make the best. But yesterday, last night actually, I crumbled.
My friend Maureen (Mo) has been pretty ill lately. I've known her since we were knee high to a grasshopper. We used to be snot nosed little girls running through Sunny Shores Sea Camp thinking we were in charge of things. She's the boss lady. She has so much sass in her-and its what I love most about her. She never takes crap from anyone, and my goodness she could make me laugh so hard I could black out from laughter! But she is sick now, and I can't even read her perky little updates on Facebook. It hurts. In fact, it aches, my heart is breaking for her. She's on a vent right now, and things are not looking to positive. But she is a pistol, and a fighter, and I know she won't let this little battle get in her way. She's been blessed with the most loving family and friends-and she knows this, and knows how we love her. I selfishly hope she keeps fighting, even if it is for us and not herself anymore. I want one more time to see her and have her make me smile.
All this happening had opened up a wound with CF that I tend to try and hide with positive mental bandages. When I first became really sick, Jon described myself as being a "sandcastle" to him. At first I didn't understand. But when you have a sandcastle, and its nice and compacted with hard sand, and you go to hug it and love it crumbles away from you. This is how it feels having friends with CF. I love them so much, and I wouldn't want to NOT know them, but the more I love the more it feels they are washed away from me. It becomes hard. I only have a handful of CF friends still alive, and I make more all the time, but the ones who've been taken away that have made a large impact on my heart. When I fight, I fight in their honor. Some don't make it because of things they did, the way the took care of themselves-and I learn from it- as if that was why God gave them to me in the first place. I'm at an age now where I have seen more friends go than most people have lost in a lifetime. And Mo fighting this battle has made this pain come to the surface. I don't want to lose anyone else. My mind is not ready. Neither is my heart.
All that being said, yesterday on the way home from dinner, I just crumbled in the car. I was sobbing uncontrollably, inconsolably. Poor Jon didn't know what to say or how to comfort me, because he to knows what its like to love a sandcastle that is being washed away. We both agree though, it is hard to watch the castles being swept to sea- we love,cherish, and adore every mintue we got to play and enjoy the sandcastle. This time here, in my sandcastle, is the most precious time I have.

$10 for an IPAD

This post is coming from Ashley's cousin, Jenn.  Please continue to read and join us in our IPAD giveaway!  In an effort to help as much we can, our family is going to have a giveaway. We will be purchasing a brand new IPAD. From May 1st-31st we will be running this giveaway. I will post details here and every day on Facebook.

For every $10 donation that is made to Ashley's transplant fund, an entry will be made on your behalf to the IPAD giveaway.


Please make sure that you click on the red "contribute now" button on the left side of the page above Ashley's picture. For multiple enteries to count, they must be done in $10 increments. If you make 2 $10 donations, you will have 2 enteries. If you make 10 $10 donations, you will have 10 enteries. The donations go directly to the National Transplant Assistance Fund and they are tax deductible. In addition to an IPAD entry for every $10 donation you make, our family will donate $1 for every person whom makes a donation.
Ashley will randomly select a winner June 14th. This will allow for all of the donations to be posted and every entry counted. Ashley will have herself video taped as she randomly selects the winner. The video will be posted here and also on Facebook. I am hopeful that this great idea will work out as great for Ashley as it did for the children in Kenya whom benefited from a fundraiser just like this one.

Please share this with friends, family, on your facebook or on your own blog. The more aware we can make people about the challenges that people face in getting the proper medical care, the more good we can do. Thank you in advance for your support and thank you for taking the time to read about Ashley and her newest adventure.

$10 can make a world of difference and give someone the GIFT OF BREATHING!

To make your TAX DEDUCTIBLE contribution today, go to http://www.ntafund.org/find-a-patient/profile/index.cfm/patient/8709F3F5-F91C-86EB-6D967F9A587472CE and click on the red "contribute now" button.

Neither Apple nor the National Transplant Assistance Fund are a part of this fund raiser. Neither have supplied any material or endorsement All proceeds are to benefit the National Transplant Assistance Fund in honor of Ashley Kennen.

A look at why we are doing this fundraiser - Ashley, through someone else's eyes:

Ashley is my 26 year old cousin who at the age of 9 months was diagnosed with Cystic Fibrosis (CF). It is a genetic disease that is basically the overproduction of mucus. Right now, Ashley is facing a huge hurdle in her life. She is at the point in this disease where she requires a lung transplant to be able to continue to breathe.

Ashley is an amazing woman and just like a sister to me. She has managed, despite having CF, to go to college and get her degree. She got a job as an ultra sound technician, bought a house, and is now married and the proud mama of 2 dogs. She has made something of her life when faced with much less than ideal of cirumstances. We are all faced with challenges in life. While hers may be greater than some others, we all push through and we all survive. That is just what Ashley is trying to do.

Because Ashley went to school and got a job, she lost the title of "disabled". Disability and Social Security benefits ended - which as long as you are able to work and be a productive member of society, I understand. But what I don't understand is why now, when being a productive member of society is what Ashley is struggling with - per her disease, she can no longer receive those benefits. It is a 2 year process to reclaim the Disability status. She does not have 2 years to wait for those lungs. Had she simply lived off of those benefits and not gotten a job or gone to school - there would be no problem and they would be available to her. Does that process make sense at all?

Ashley is in need of her lung transplant. They have insurance, but the costs of such a transplant (mainly care and medicinal after transplant) far exceed that which insurance covers. All would be completely paid for with Social Security and Disability had she not gotten a job - but she did.

Ashley went 2 weeks ago for an evaluation. There is a small window of opportunity to do a transplant on a CF patient (and I assume any transplant patient). You must be sick enough to take the risk of surgery and rejection, yet healthy enough to with stand the surgery and come off the ventilator. Last Thursday Ashley found out that she is, in fact, an ideal candidate for the transplant at this time in her health. However, due to insurance restrictions, they will not list her.

Niether Ashley, nor her family are going to let insurance and regulations stop her from breathing.  We will do whatever we can to help, and hope you will join.  Ashley will be enjoying her new lungs while one of you will enjoy your new IPAD.

Finally

Life is finally coming together! As you know, I had been having some issues with switching from Medicaid w/ HMO to just Share of Cost(SOC)...For some reason, they can only 1/2 get it right at that place! I've been told that the SOC was added, but the HMO cannot be removed until June 1st. Thank goodness the CF Freedom Pharmacy (a little shout out!) was able to send me my meds anyways, and back bill for them. They helped me out a lot. I had got home from a rough day, and there was a HUGE box on my door step filled to the brim with my meds. It was a little like Christmas for me =).So now, I wait until June 1st to come in hopes that all falls into place with no bumps in the road. I had involved Senator Nelsons office in the whole ordeal in hopes to expedite things, but at this point I am just fighting to get things switched 1-2 weeks sooner than they will be solved on their own. Anyways, it will be fine I'm sure!


June 2nd I have a CF clinic appointment. I'm kind of excited to meet (hopefully) Dr.Rolfe. I've heard awesome things about him. I also hope to catch up with some people in Tampa while I'm there. Everytime I go, I try to see who I can when I can.

So I've mentioned before I love where I work. And some people can't understand why...LOL...but here's a great reason: the people. The girls I work with have arranged a Yard Sale to help raise money for my transplant.(June 26/27, July 10/11, and July 24/25) in Lady Lake. Super excited about it, but mostly honored. I feel unworthy of such kindness-I just hope the girls know I would do it for them anytime too. I so hope to be healed quickly so I can go back to work there if they'll take me back! (July 7th I'll have been there 2 years!)

Also, another cool event coming up was arranged by my Father and Mother-in-Law. They've arranged a golf tourney July 17th (July will be a busy month for us!) in Ocala. Don't have all the details quite yet, but when I get them I'll get it posted. Again, I'm very honored they've taken the time to get this together for me. I love them just like my own parents...and not many can say that about their in-laws LOL.

Today, I'm feeling pretty chipper...saw my Dad, going to watch some shows I missed b/c I go to sleep so darn early, and then going to clean the house up. Can't wait to see the hubby and discuss what we're going to do with our little garden. Its SO cute! I can't wait to actually have food on it! The downside to it all, is I can't really help tooooo much, because M.R.S.A is in soil, and is potentially deadly to me...but I like to help pick what we plant and help with the landscaping.

Anyways, I hope everyone is doing well =) And please say a little prayer for a fellow CFer of mine Maureen (Mo). She's been battling an infection from her port that has knocked her off her feet pretty good. She's a survivor though, and I'm sure she'll be back to her sassy self soon enough!

Family

My family is pretty tough. In fact, tougher than I am. My Dad tells me stories of when I was just a little baby, and how I was always so sick. He was going shopping with my Mom and his Mom, but they left Dad and I in the car. I was still a baby, so Dad crammed himself into the backseat of the two door car to sit next to me. Once I started fussing, he picked me up-and I exploded like a time bomb! Out both ends, all over the poor guy! And he didn't even throw me! ...Now that is love!
Or what about the time I was in the hospital, I was about 14, and a nurse kept insisting that these two drugs could be combined-and I kept telling her they couldn't. Finally, at 4 a.m that morning, I called my Mom crying telling her to call someone quick because this RN was trying to kill me! Thank God my Mom is a RN too! Things got under control shortly after, but my Mom was there to answer my call immediately.
Then there was my little brother. Oh the fights we have fought! We're about 5 1/2 years apart and light years away in our thinking. But the one time I had appendicitis he was there. I could barely get out of the chair, and he carried me to the car, like a superhero, so I could get to the hospital. His girlfriend has even come to Leesburg to help me go shopping (no really, I needed help). LOL
And my cousin, Jenn...She recently had an experience with me, poor girl. After watching that tube being shoved down my nose and having myself leak out of every pore in my body, she still took me out to eat after! She was prepared to even stay the night with me! Only then did I really test her, when I had a reappearing act of my chicken and wild rice soup leap across the table, which she caught with a plate AND had no spills. Pretty nifty.
My Grandpa and his girlfriend Janette, they're pretty awesome too. Grandpa comes up with her bringing huge meals already made so Jon and I don't have to cook. And Grandpa is always entertaining!
My husband had to bathe me for a while. It was a definite change in our relationship. You are in love and committed when you get married, but when you bathe,dress, and clean up puke from the one you love-its a whole other level. He has had to see things that scare even me. And when he got sick,the ONE time he has, I was a nervous wreck! How does he do it?
My family has done this stuff for me out of love. Maybe I've only mentioned a little here, but its more than anyone would careor have time to read about. And as much love as they give, I feel I could never be able to show my gratitude. They have helped me survive. They are why I survive. And I'll keep pushing for them.

I'M OFFICIAL!!!

Well its official...I can finally say it...."I'm on the lung transplant list!!!" So very happy and grateful this ordeal of just being listed is over-for now. I say for now, because it can always change with the wind.
Wednesday, my cousin Jenn headed south to stay the night with me only to wake up the next morning and drive another 2 hours south to Tampa. Poor girl had to see a lot! She watched as a tube that was like 2 1/2 spaghetti noodles around was inserted into my nose and down my esophagus, then slowly pulled out as I sipped water. Seems clean enough, right? WRONG! I was drooling and my nose was running and I was crying...I was truly a baby! But my goodness it hurt!!! It would hit my gag areas and as soon as I thought I was settled and it was okay, they'd move it again! Not fun! Then, they took an even smaller tube and put it down my nose and down the back of my throat. This was supposed to stay in place for 24 hours to monitor what happens with the esophagus when I cough, eat, burp...etc. Well I was told to eat only hot stuff and that would make the tube more comfortable. Within two hours I was puking and unable to breathe! I felt like I couldn't get enough air in, and I had no idea how I was going to sleep with it in either. After losing lunch all over Panera (who wasn't very good sports about it and tossed our food before we were done) I had to take the tube out and throw the towel in. I tried. I really did, but it was way to scary not being able to catch my breath, gag, and cough...too much! So we had waited around to see if TGH would be able to see me then, to sign the magical papers- but no, I had to head home.
So last night, after being allowed my savior-Prilosec...and Tramadol, I had gotten some extra energy and cleaned the house. I love that my husband and everyone else tries to keep my house straight when I can't-but the house was missing my OCD touch! LOL So it wasn't until about 10pm I finally crashed and got ready for today.
Now today had a weird start. I was very, very cranky the whole morning, and the whole way there. I have no clue why. It could have been nerves that I wasn't acknowledging. When we finally got in and saw the first receptionist who said "Its a big day for you isn't it", then I got excited! She had me do paperwork, get blood drawn, weight, and PFTs- then I could see the transplant coordinator and the doc. Well, the good news is I haven't lost any more weight-may not be gaining, but I'm certainly not losing. And my PFTs were pretty stable. I had to walk for the doc with a oxygen saturation monitor on (and myself and the RN think the SAT monitor was broken), only to find he wants me on 4 Liters if I'm moving around. Ok, no biggie. Plus, he said it would add points to my ALOC score (I'll get back to the meaning of that when I get the papers out of the car). But this number is basically on a scale of 1-100 and 100 is the worst health, they would not do a transplant then. and at 1, you probably wouldn't be listed. I was 37 =) (For those who know me, notice no 9's!!) He is trying to add a point or so I think by upping the O2. I have about a 6-12 month wait now. Any day or time I can get the call to start my new life....I can go back to the old me, but new and improved! How exciting! I have so much more to ramble about, so I'm thinking I'll have another blog come Sunday. Happy Mother's Day!! I hope all the Mom's out there get the love they give....I know my Mom and Mother-in-law are pretty super, so I hope to give them a great day. Tonight, I'm going to breathe a little easier knowing that any moment I will being breathing freely!!! LOTS OF LOVE TO ALL OF YOU!!!! XOXO

My Accessories

Recently I learned how curious people are. I've had to add an accessory or two to manage to be able to go out in public. Somedays, I use a wheelchair since my fatigue can make it pretty hard to get things done. And somedays, most days, I have portable oxygen. I am sure almost everyone has seen someone in a wheelchair or with O2 at some point in their life, but each look I get is as if its a new thing. And I understand. Curiosity, as innocent as it may be, can sometimes be cruel.
Most people will look once, then twice, then keep going. But others, and I'm surprised to say this, but older people can be the worst. They stare. If they had laser eyes I'd be fried! I want people to ask me why I'm being wheeled around. I look perfectly healthy on the outside- if you don't notice the clubbed toes and fingers from years of lack of O2. So I can understand questioning-why is she being wheeled around? And the oxygen isn't easy to hide either. While some days I can mask the tank under my purse there are days when all I carry is the oxygen. Its a distraction from what we are taught to look at when talking to someone-their eyes. I even did the "stare" before I was in this position. Its all curiousity, and thats okay....but ask. The other day in a store a little girl asked , "Mommy, why is that lady being pushed in a chair? And whats that thingy on her face?" I just smiled. I could tell the Mom was embarrassed, she mouthed "sorry" to me, and told her daughter "Its not nice to stare. She doesn't feel well." And ya know, the Mom nailed it on the head. I don't feel well.
I hope people can become educated about Cystic Fibrosis enough so that one day when I say "I have Cystic Fibrosis" they can say "Oh! I know all about it. Its genetic right?And it affects your lungs and pancreas mainly. How are you doing?" This month is Cystic Fibrosis awareness month and I encourage those who don't feel they know enough about it to do some research. The most informative site is http://www.cff.org/ With all kinds of questions and answers. And if your a new Mom or a Mom-to-be, make sure your child is evaluated for it!...annnnd HAPPY EARLY MOTHER'S DAY! =)

Still Kicking

Well today I got some things figured out. Sort of. My Mom has done a lot of the hard work for me. I kind of gave up for a few hours yesterday. I threw in the towel. I had to work yesterday (thank God because if I stayed home I would've lost my mind even more so!). Before work I had to call Medicaid, yet again, to clarify that I should have Share of Cost (SOC). I had gone to the lady doc on Monday to get clearance for transplant, and they ran my insurance and it said again that I had HMO Medicaid. I was fuming, this was all supposed to be resolved on Friday. But by the time the appointment was over I was too late to call that day.


So Tuesday came and I had a few hours in the morning to do my treatments and get ready for work. So I called Medicaid to see what happened and where the mistake was - AGAIN! After being on hold off and on for 45 minutes (mind you, I'm on my cell phone) they told me I don't have SOC and I won't have it until June. Okay, I had been told that before. But I was also told they changed it. It didn't help that the lady was completely rude to me. She didn't understand that each time I talk to someone there, I hear a different story. Well, today I finally talked to DCF patients services and she was able to clarify everything. When I applied for the SOC, my husbands info was left out. I did not intend to 'mislead' them. We had asked several times while filling out the application at the DCF office if we should include him.  Each time the 16 year old attendant declared that because it was for me, he was to be left off. So we did just that. This is the whole reason things have been so confusing since then! Well, I gave them my husband's information and things should be cleared tomorrow.

I have to reach my SOC (which I found out is actually $1849) most likely in the beginning of the month for it to show that I have SOC, otherwise it will show I have Medicaid. So tomorrow I need to pick a pharmacy and get all my drugs ordered so that it can go into effect. Hopefully, this will allow Tampa to see that I have SOC and not Medicaid. It'd also help if the financial lady there would call me back, but that's a whole other blog. Are you confused yet? LOL....I hate that its this complicated, as if my health isn't complicated enough.

In the end, I've learned a lot in the past few days. I have an amazing family. My Mom took over and fought for me when I thought there was no use. She called Senators, e-mailed everyone, and made millions of phone calls. She is stronger than I am in so many ways. I'm not saying I don't think I'm worth the fight, but when it gets hard sometimes its easier to not deal with it. She gives me the strength to re-focus and refuel and get back on my game.

Tomorrow, my ear will hurt from the many phone calls I need to make. But I'm ready. I want these lungs, I want to breathe when I laugh. I want to be able to laugh. I feel I hold back because I know it will lead to choking. I want to be able to chase my dogs in the yard like they beg me to. I want to be able to pick up my baby cousin and chase the other at the same time. I'm ready. When I get down, and those nasty people try to keep me down, I need to bring myself back to those thoughts. I'm blessed to have the love and support I have. And I love everyone back just as much. Even if I never get listed- I know I am  loved.

The Last 3 days...

Wow... A lot has happened in the last 3 days, and not all the best of news either. I got the "call" from Tampa General after they had their meeting about whether or not to list me. I was told health wise I was the absolute perfect candidate. But, due to insurance, I'd have too many issues. The good news I took from that was my body is strong enough for the surgery, which means chances of a smooth recovery will be really good. My insurance is something that since I was little, no matter what type I had, has always given me problems. With transplant, the issue is not enough medicinal coverage. A lot of the medication post-transplant HAS to be name brand drugs.  Science just has not caught up yet with generics.

So when I was granted "Medicaid" we thought it was the share of costs (SOC), and everything would be fine. But it wasn't. I was granted full blown Medicaid, which I do not qualify for in any way. Ironically, this hurt me instead of benefited me. I won't be able to be listed until I have share of cost Medicaid, which got updated as of Friday morning (woot woot!) The share of cost, for those who don't know, is when I have prescriptions that exceed a certain amount of my income then Medicaid will cover the entire month's bill. Now that is pretty easy for me, seeing as one drug is $1,916 and another is $3,000. Those are the high dollar ones. We're hoping since its been updated and changed I will be able to be listed now. I guess I'll find out sometime this week? Otherwise, I need to wait until Jon's insurance at work is upgraded in June, which may then go into effect in July. Sheesh! I swear, if you weren't born into the madness that is the medical and insurance field, then you could get so lost and drown in it. It's sad, thinking of those who do.

On another note, Friday was also kind of rough because I had had a horrible stomachache for days. (Actually it started the Sunday before, but I dealt with it). I'm going to get personal here, but I think it's important that people know what patients with C.F. have to go through - as graphic and unpleasant as it can get. This stomachache was not getting better, if anything worse. I was going to the bathroom regularly, just not completely. This can be pretty common in CF'ers. Cystic Fibrosis is an over-production of mucous and it is not limited to the lungs. It affects every organ. So, I had an intestinal blockage. Painful...very, very painful. After going to the doctor, because I was vomiting now because I was so impacted, I had to get 3 enemas. NOT fun. In fact, horrible. I also had to drink this icky purple stuff that tasted like what I assume battery acid and grape soda taste like. This caused mayhem...but in the end I felt better. Thank God I have a Mommy who pushes me to my edge sometime, because after enema #1 I was ready to give up. My insides felt like they were going to explode!

After that long, treacherous day I slept almost 11 hours straight. I was so physically exhausted I was in tears. Its so odd how your mind can be completely fine and positive, and your body wants to do something completely opposite. I guess that's what keeps you going though. The positive thinking. The prayers. And of course, knowing my Dad was wanting to take me on the boat the next day. =)

A Day of Rollercoasters

Yesterday was pretty grueling. I woke up with a horrible stomach that has been haunting me for a few days and a "To Do" list that was never-ending. I had a lot of loose ends that needed to be finished-including calling Social Security for an appointment. For those who know me, this is a task I DREAD! Every time I had called in the past to the main office I'd go through the menu as best as I could to get to a person. Well, once I thought I was where I'd get a person, it'd say "All operators are busy at the moment. Please try your call later." AND HANG UP ON ME! I was baffled! I tried for 20 minutes just to get hung up on?! So yesterday, having to call S.S. was not one of my favorite things to do. I got the local office number and gave it a try.

Believe it or not, I was able to reach a person! I explained to her that I had been told about a month ago how much I needed to earn in the first quarter, and that once I reached that I needed to make an appointment. Almost immediately she fought me. She told me, I don't qualify for anything if my husband and I were still married and I was still working. So I patiently tried again to explain to her that I had been TOLD by someone in her office to call and make an appointment, and that person was fully aware of my situation. That's why she asked me to come in, my case is a little more complex. I was declared disabled, but because I chose to work and get married, I became "un-disabled" (if there is such a thing?). The operator was still refusing to hear me out, and kept saying that she couldn't give me an appointment if I was just going to be denied. OMG!

This is when I lost it, I started crying...trying to hold back the tears I basically begged her for an appointment. That's when she got nasty. "Ma'am don't start crying- that ain't going to work here. Stop your crying and listen." I couldn't believe it. Stunned, I started SOBBING. I was out of control. I've been told different things by every single person I had talked to at Social Security and DCF, and it all seemed like no matter what no one cared enough to want to hear me out and help. My sobbing slowly subsided long enough to get an appointment next month. That means its in next quarter (since 1st is Jan-Mar) and I've already began 2nd. So if they say I still haven't worked long enough, then that means I'll have to push myself a little harder to earn the precious amount they want - so that I can become "disabled" again.

This brings me to another point. I was lucky to be healthy enough to make something of my life. I went to college, I built a career doing what I love, and married a man that I love. I didn't shortchange the life I had been given just because I had a life-altering disease.  I did and do everything I can, in the past and present.  For this, the government no longer sees my having Cystic Fibrosis as a disability. This is a progressive disease. I knew that when I began my studies, when I married my husband. But this never stopped me from trying to postpone the progression. I did a pretty darn good job of that up until recently. People who work with the Disability office should learn some compassion, and not just see if you can categorize each person. Where is the reward for trying and succeeding? I ask this sarcastically, because I have been rewarded in other ways. I love my life and I don't regret a minute of how I have lived it. That's my reward for now, until I get my new lungs =)

The Road Ahead

 Last Wednesday and Thursday I had a LOT of testing done to see if I'm strong enough, yet sick enough for transplant.  I had an EKG, echo, esphogram, x-ray, CT, arterial blood gas, 13 vials of blood drawn, a bone density scan, a right heart cath, and a TB test (I think thats all).  I met with the social worker, the pyschologist, the pulmonolgist, the dietician, and the surgeon.  They all seemed very nice and competent. They explain the donor lungs could come from GA, FL or Puerto Rico.  

Once the team receives a call that there may be a potiential donor, they (the surgery team) run tests on the lungs.  If it is decided they are good enough, I'll be called in.  I have 2 hours to get to the hospital.  Once there, they'll run tests on me and make sure I'm ready.  Let me tell you - mentally I couldn't be more ready.  I went through a period where I was more scared than anything.  But now, I realize more than ever how beautiful life and breathing is.  I look back to when I was 16 in marching band and realize, man I had some strong lungs then... But of course, you don't know what you've got until its gone.  I am ready to breathe. 

So anyway, the surgery can take anywhere from 10-12 hours.  YES - HOURS! I'm told it's because CF lungs are sticky from the mucous, and we need to be cleaned out a little more.  But, I'm also told we do the best with recovery and quality of life afterward =).  They have 2 options for the incision sites.  They can go under my breast line (called a clamshell) or cuts on my sides - it pretty much depends on my stability when I get there.  They usually do under breast for CF patients in case I need to go on the heart-lung machine and they need to do an emergency bypass (kind of neat - kind of scary).   So when I wake up, I'll have 4 chest tubes draining the excess fluid from my chest cavity,2 small tubes for drainage, I'll have a ventilator tube in my throat and my arms will be strapped down. I'll also have a catheter for the potty thing, lol.  I was warned when I wake up, they will be yelling at me to "BREATHE BREATHE BREATHE!" This is to get me breathing with the ventilator, and not against it.  They told me usually the 1st or 2nd day they will take me off the vent, and I'll be BREATHING! On my OWN!  With NEW lungs!  How cool is that!  

I get teary eyed thinking of the miracle of this, really. Someone's family was kind enough to give this gift of air.  Of breathing freely.  Of living.  It's phenomenal!  Beautiful!   So after that I'll begin an intense rehab.  Walking, stretching, using the stationary bike.  I have to get strong.  Especially my lower body because the first 6 months I need to let my scars heal and becareful not to strain.  I can't drive until I'm off pain meds (which will be at least 4-6 months) and I'll need 24 hour care the first 6-8 weeks. Kinda weird, because I'm very independent - or I used to be until I got so sick.  I know having new lungs will make me want to do so much, but I'll be restricted.  Only for a bit, then I can dance! =) I'll be on a new set of meds:  steroids, anti-rejection, laxatives, pain meds and some profilatives (sp?) so I don't get infections.  No more salad bars and I'll have to be an even bigger germaphobe than I am now... but so what! At least ya know I'm clean! 

So all of this is what I have to look forward too... and I'm excited!  I want to run a marathon with my friend Mike, I want to swim with dolphins (getting over a fear of fish), I want to ride my bike on the beach, I want to dance until my feet hurt!  I have so many things I want to do...I want to be able to work and give back.  I really understand my patients - I've been one my whole life!  I think about doing social work for post transplant lung patients too.  More school of course.  Once the energy I'm giving to breathing can go to living - I'm set.  I understand there are challenges I may face, but so what!  I face them now... and I'm surviving.  I want to be able to absorb every ounce of life!  I'm still a newlywed.  But right after I got married my health declined rapidly and drastically.  So I'm ready to REALLY enjoy my husbands company.  Not as a caregiver, but as my husband.  So many wonderful things to look forward to.

I want to mention how grateful I am to those who have joined/donated to my cause (Keep Ashley Kennen Breathing).  This is the life I face, and for you to not have any idea what it's like in my shoes, yet be compassionate enough to still understand is very admirable.  I always say that everyone else is a hero in my eyes because really we are all faced with challenges that may be unspoken.  Some greater than others.  I want those who are invovled in my cause to know my challenges and triumphs.. no hold backs!  I'm grateful to be alive, and ready to be living my life to the max!  Thank you...from the bottom of heart!