Health Update

Well I am sure as many of you already know last week I had a bronch done up in Gainesville to check and make sure I had no rejection after receiving treatment a month prior for the acute rejection my doctors had found.

I am pleased to report that the bronch results came back in recored time (the next day~usually its not till like thursday or friday I get results if my bronch is on a monday) and they were NEGATIVE for rejection!! YAY!! I can not begin to put into words how relieved I was to get those results. :)

While my mom and I were in Gainesville we also had an appointment with my vascular surgeon who did my Arterial Bypass surgery in February. I had an ABI test done and I have completely 100% normal blood flow in both my legs so that was another piece of good news! I have been having some minor swelling in my left foot/ankle from time to time lately which is what prompted me to make the appt (to make sure everything checked out ok) but the PA said that that could just be my "norm" now and that everything else looked good. So I don't have to go back to see them for another 6 months.

I did talk to my tx doctor about my back while I was up there. Ever since my surgery I have had aches and pains in my lower back but nothing that ever stopped me from doing anything. But the last month or so the pain has been SO bad that when I wake up in the morning I can barely move and unless I take something for the pain it will continue like that for the rest of the day...its HORRIBLE! :(

So Dr. Baz suggested that I go and see a Neurosurgeon in my hometown to make sure I don't have a chipped disc or disc disease due to Osteoporosis or anything like that. I for one don't think its either of those two, I feel its more like a pinched nerve or muscular but what do I know?? Anyway...so last Wednesday I went to see the Neuro guy and he agreed with me that he thinks its more muscular but couldn't rule anything out until I got a CT Scan and MRI done.

That was today. I have had many CT scans done so I knew what to expect but have never had an MRI so I was needless to say "a little anxious" about it considering I don't like things directly above my face! I was in the tube for an hour and since I am writing this blog tonight you can see I survived but let me assure you I did NOT enjoy any minute of it at ALL!! LOL

I got the films from the radiology place and now have to wait until next week to see the Neuro doc again to get a diagnosis. I will let you all know what he says but I am thinking some PT for my back is somewhere in my near future....wish me luck that that is the LEAST of my problems and that I don't have to go through any more surgeries!!

I hope everyone has a great Labor Day weekend!!

XoxoX

Last Week...

Well last Monday my SIL Stephanie took me back up to Gainesville for an x-ray to see how my little lungies were doing and he ended up scheduling a bronch for that afternoon and I was admitted again! :(

Steph spent the night with me and then headed home the next morning after we woke up. I am so lucky to have a SIL like her...she is ALWAYS there when I need her no matter what!

Unfortunately, we aren't entirely sure what is going on with me. When he does an xray and bronch it looks like pneumonia in the left lung but I have had no fevers at all (knock on wood!) and my biopsy's keep coming back negative for rejection but for some reason I don't think he is happy with those answers and thinks something else is going on! He said infection/rejection can look the same in a bronch so sometimes its hard to tell. So at the moment I am on IV cefipime twice a day and while I was admitted into the hospital I did 3 days of high solumerol IV and now I am on a prednisone tapper. Oh I am also on coumadin for a month (hello bruise city!) because I had a CT scan last week that showed a small blood clot so they are treating me for that as well! I tell yeah if it isn't one thing its another! :(

Easter was great. Dinner with my family was awesome and I am glad I wasn't in the "Get Well Hotel" as one of my friends calls it! I was there for 4 days last week but was able to leave on Friday to join my parents and little sister in Panama City Beach for the weekend to visit my Aunt and Uncle! It was a nice but WAY to short of a trip....next time it will have to be a longer

visit and maybe Danny can go too!

Our little family at Easter!

Me & Danny! :)

Me & Jessie in Panama City Beach!

Speaking of Danny...while I was away my awesome husband checked some things off his Honey-Do list and painted/added chair-rail to the living room and dining room. I am so thankful to have a husband that is handy AND motivated to actually do the projects that I think up in my head! :)

boring living room from when we first moved in....

slowly getting there...

Dining room from when we first moved in...

Now! :)

Well, thats all I got for now...I am on IV's for the rest of the week and have to go to a clinic appointment on May 11th so we will see what he says then. I have a meeting tomorrow for Jen's Kids so we will see how that turns out. The hospital unfortunately hasn't done a darn thing while I was away so we are meeting to decide where to go from here. I am kind of disappointed in them that they dropped the ball so we will see.

Anyway....have a great week everyone!! XoxoX

Lesson Learned...

Never go up for a "routine bronch" without an overnight bag just in case....that is the lesson I learned yesterday the hard way!

So Wednesday I called my coordinator to say I thought I needed a bronch because I was feeling a little congested as I still have a little hole in my neck and it makes it VERY hard to cough anything up if need be. My energy has been fine, my O2 has been fine it was just at night when I laid down to go to bed did I feel kind of crappy. So they scheduled me for a 8am bronch Thursday morning. I thought ok I will go get cleaned out and then head on home just like I did last time. NOT. SO. MUCH!

After doing my bronch, Dr. Baz talked to Danny saying that something just didn't look right so they were admitting me and that we would know more (whether it is rejection or infection) the next day. Because we weren't expecting to stay we had NOTHING with us...no clothes, no phone chargers, no toothbrushes....all I had was a pillow and blanket from the car ride up and my laptop and thank goodness I thought to have Danny take it so he had something to do during my bronch! So I sent Danny home last night so he could go to work today and pack our stuff and then he was gonna go back up to Gainesville when he got off.

Well, this morning came and luckily I don't have rejection but I do have pneumonia in my left lung. But the good news is its very treatable and my dr let me go home today and do IV's at home! YAY! Shortest hospital stay ever! :)

I do have to go back to Gville on Monday for an xray...if it shows improvement I can go back home and continue my dose of IV's if its not improved he will readmit me and do another bronch on Tuesday to see what else is going on!

Im just glad to be home for Easter weekend and spend time with my family. Let me tell you last night sucked being by myself in Gainesville....I think I cried for like 2 hours after Danny left just because I wasn't expecting to have to stay so I was thrown off...I felt like such a baby after I was done being emotional! lol

Anyway, I will let you all know what happens next week!! Have a great weekend everyone! :)

XoxoX

Twelve days just FLY by...

I just looked at blogger and realized I haven't updated in 12 days!! Geez-louise!

Where to start...well I got my biopsy results back from my bronch a couple weeks ago and it was NEGATIVE for rejection!!! Woo-Hoo! I love hearing those results! :)

We had and awesome time at our friends wedding on Sanibel. It was so nice to "get away" for a night even if it was only an hour away from our house. Lounging by the pool with a RumRunner in my hand is the way to relax in style! Unfortunately, we didn't get to do the parasailing thing because my doctor said NO until my sternum is "completely" healed...bummer! But one day I will...

Us and the Newlyweds!!

Me, Danny, his brother Troy & wife Stephanie

Me & Danny <3

View from our room! :)

The next few weeks are jam packed for me. We have Easter next weekend, next week I think I am going back to Gainesville (I swear I am always there!) then the following weekend me and my family are going to Panama City Beach to see my Aunt and Uncle. Then May 4th I am riding up with my dad to Ohio to pick my little brother up from college. Then that following weekend is Mother's day....and in the middle of ALL that I go to physical therapy for 2 hours three days a week!! Im telling ya I am a busy girl!! :)

Man I am exhausted just thinking of all I have to do! LOL I just got home from PT so I am gonna straiten up my bedroom a little bit and then jump in the shower. I need to have dinner done a little early tonight cause we have to go to the grocery store after dinner and I don't want to be going super late!

Have a great Monday everyone.....

XoxoX

Gainesville Bound...

I was supposed to already be up in Gainesville as of yesterday because I had a clinic appointment this morning. BUT...the last couple days I could feel junk rattling around in my chest and because I still have a stupid hole in my neck cause of the wonderful trach I had (can you here the sarcasm??) it makes it VERY difficult to cough anything up! It basically gets stuck in my throat and its horrible. The little mucous I managed to force out luckily was clear/to a very light yellow so I wasn't to concerned. But I did call the coordinator yesterday to see about having a bronch Wednesday afternoon after clinic to suck all the junk out. I just don't want it brewing down there in my lungies and causing a bigger issue than it needs to be...I want it outta there!

SO, after my coordinator called me back with the fabulous news that my Dr couldn't fit me in today for a bronch. They cancelled my clinic appt and are just having me come in at 8am tomorrow morning for bloodwork and a bronch instead. Which is all fine and dandy except now I have to wait one more day of feeling congested (which I don't like btw! I have had months of normal breathing I like it that way!) plus I had to re-configure my ride situation. Luckily my SIL is awesome and her boss is awesome and gave her the night off to help me! Cause lets be honest I can't drive myself home after a bronch... :)

I am exhausted though! The last couple nights when I lay down is when I REALLY feel the congestion so it keeps me awake. Last night I even tried to sleep kinda sitting up and that was little help. So I am just hoping (an praying) that the bronch fixes everything and I will be sent home a happy camper. Because two of our really good friends are getting married Friday night out on Sanibel Island and I can't wait!! We got a room out there and everything (the resort is like 45min from our house and with an open bar till 2am we thought it best to stay there!) so we are gonna take full advantage and lounge by the pool....im even trying to talk Danny into parasailing with me but he is afraid of heights and being a sissy about it! LOL The man can walk not tied to anything on a roof beam but cant go in the air strapped to his wife....WTH! :)

I will definitely have pictures from this weekend that I will post once we get home. Until then I am gonna finish packing my bag for Gainesville and wait for my SIL to get here so we can hit the road!! Have a great rest of the week.....XoxoX

Gainesville Update!

Well I got my biopsy results back from my bronch last Monday and they were NEGATIVE!! Woo Hoo! So relieved....its kind of stressful waiting for those results.

Thursday I had the pressure test done on my legs and both have 100% blood flow in them, they are perfect! Well...except for the little bit of numbing I have on my left shin and parts of my left foot. The doctor said after the year mark of my surgery any numbing that I still have will probably be permanent but at this point its to early to tell what if any I will have!

Thursday night Mom and I met a great gal by the name of Lori. I have been reading her blog for some time now and she reads mine as well. When she emailed me and told me that she would be visiting her cousin in Jacksonville and would I like to meet up for dinner I jumped at the chance! We had an awesome time and I can't wait till the next time we can hang out...who knows maybe I might have to take a trip to NC soon! :)

Physical therapy is going good. Not to much to report there. Still working on our downstairs bathroom...its half painted its just needs the glaze but Danny has been working so much he hasn't had time to finish it. I wish I could help but painting is a no-no for me! Oh well it will

get done soon one thing Danny is not is a slacker!

Here are a few pictures of dinner the other night!! :)

Me & Lori

Lori, Me & Mom

Me & my Mom :)

Busy Week!

Hello! I think I told you all in my last post that I was scheduled for a bronch/biopsy on the 24th and then I had other appts as well with other Dr's since we were up there. I figured get everything done in a couple days then we don't have to drive to Gainesville for awhile.

Well that was a great plan until my transplant Dr called last week and wanted to move my bronch from Thursday morning to Monday morning. So needless to say we had to drive to Gainesville Sunday night to sleep in a hotel, woke up had my bronch (first one since my trach has been removed I will get more into that in a minute) slept in recovery for a couple hours, was released to go home, had lunch at Fridays, got in the car slept some more and then finally arrived home! AND because we still have all my other appts that I made we get to do it all over again on Thursday and Friday minus all the sleeping since I am not having another bronch!

Its not so bad I just hate being in the car for HOURS....especially if its just me and one other person because then I feel like I have to stay awake and talk to keep them company when all I really want to do is sleep so the trip goes by faster!! Ever since I was a kid when I go on road trips my eyelids get very heavy and I am usually asleep before we have left the driveway! LOL Happens every time.....

I don't have the results of my biopsy yet but all my blood work came back ok and Dr. Baz said my lungs looked really good and that they were clear! Now onto my bronch experience...this was my first bronch post-trach and the first time going in through my nose so I wasn't entirely sure on what to expect.

First of all, the lidocaine breathing treatment taste gross let me just throw that out there. SO then my Dr comes in we chat for a minute he asks how im doing I get a few Rx from him etc., he tells the nurse to give me the meds (300mcg of Fentanyl and 3mg of Versed) and then he basically starts the procedure right away. So I felt him numbing my nose and while I don't really remember the whole procedure I do recall bits and pieces and I could feel some of it too. So I think if he gave me the medicine and waited I don't know 5 minutes maybe I would be more out of it than if he just started right away. Plus I think next time I am gonna see if he can give me 4mg of versed since I know of other people who get DOUBLE that amount! He can be so stingy when it comes to pain medicine and things like that....

Other than being sleepy for the rest of the day the only other side effect I had was a minor sore throat but that only lasted the rest of the day when I woke up Tuesday I was fine. One of the things I talked to my Dr about was the fact that im not happy with my weight....all 92.8 pounds of it! He asked me how my appetite was and I said that it was ok but not great so he gave me a Rx for Megace. Has anybody ever taken this before and if so how did it work out?

Onto more exciting stuff other than bronchs and weight gaining....we are almost done with the downstairs bathroom! Danny did the first couple coats of paint Sunday and Monday while I was out of town and hopefully if he has time this weekend he will do the glazed sponge paint on top of that! It looks SO good already I love my beach theme bathroom! :)

I went to my first post-tx yoga class on Friday and it was AWESOME! I also started physical therapy last week too. I will be going to PT 3 times a week where I will walk the treadmill/maybe start on the elliptical, work on my leg and foot a little since I still have a lot of numbness there from my arterial bypass surgery and then the BEST part of all is the massages since I have been having so much trouble with my lower back lately. I have an appt today at 4! :)

Well I think this post is long enough....I probably wont post again till I get back from Gainesville so I will let you all know then the results of my biopsy and how all my other appts went! Have a good rest of the week!

Im Home! :)

Friday morning at around 7:30am I officially had my trach removed and before lunch I was discharged from the hospital!

We had some loose ends to take care of at the apartment (equipment pick-up etc) but were on the road and made it safe and sound to our house at around 4:00pm!

Friday night Danny and I went to my favorite pizza place for dinner and then on Saturday we went to Target in the morning and then spent the whole rest of the day deep cleaning (I say we loosely because I kind of sat there and "supervised") the house and putting away the Halloween decorations that were still up...yes thats right I said Halloween because I haven't been home since October!!!

My kitchen looks so pretty! When I was in the hospital I did a little shopping on Amazon (I tend to shop online when I am in the hospital...oops) and got new kitchen knives (which are FABULOUS by the way I have never cut an onion so well in my life!) and a really cute bottle to hold EVOO....that extra virgin olive oil for anybody who doesnt watch Rachael Ray on the Food Network! I will have to take some pictures of my kitchen tomorrow when I am downstairs and post them so you all can see. We have lived in the house 3 years and its just now starting to come together with the decorating for the longest time there was nothing on the walls and I didnt know where to start but its all coming together nicely!

This weekend I am re-doing the downstairs bathroom....3 years of palm trees and I am over it. I am gonna have my mom paint the bathroom this really pretty blue color and then I am going to do a beach theme in there! I found this shower curtain with flip flops on it thats really cute...I can't wait! :) I will take before and after pics of that as well....

Next week on the 24th and 25th I have to be in Gainesville for a bronch/biopsy and then see the vascular doctors as well and have the pressures in my leg tested to see how that is doing. Lets keep the fingers and toes crossed that its a CLEAR bronch and everything goes well!

Ok well its midnight so I SHOULD probably turn off the computer and try to go to sleep......wish me luck! Good Night :)

XoxoX

How long did it take you??

This is a question for all of my post-tx peeps out there....how long did it take you all to "heal" completely from your surgery?

I know that since I am on prednisone and a ton of other medications it takes a bit longer to heal than most people. But it seems like even things that seem pretty much healed (meaning not scabbed over any more, etc.) are still red. Here is an example of where the line was in my neck...while the hole itself is completely closed and flat like its not even there its still VERY red which makes the stupid thing noticeable.

This is only one example. With the amount of surgeries I have had since I have been in Gainesville (9 to be exact) my poor body looks like a road map that belongs in an Atlas of the USA!!

So I was just wondering how long I will have my lovely body souvenirs around as a reminder of my time here in good old Northern Florida and when I can look forward to finally having them start fading away a little bit.

I do realize that it has only been two months since my transplant and 2 weeks since my arterial bypass surgery so I don't expect to be completely fine at this point but I will be honest and say it makes me feel a little bad knowing I look like this right now. Last night as Danny was helping change some of my bandages I actually started crying cause I felt so bad. And of course he was completely wonderful and says I am beautiful no matter what and I know he means it but I was still sad. :(

Anyway..thats all I got for tonight. Gotta go blow-dry my hair and then we are gonna watch a movie. I have my first post-tx clinic in the morning so that means its early rising for us!!

Good Night Ya'll!

XoxoX

It's been WAY to long....

I know, I know I am a horrible blogger! It's not that I haven't had anything to say because I have and everyday I think to myself "ok I am gonna write on my blog today" and then I go to bed and it doesn't happen. But I do read and keep myself updated on what is going on with all of you! :)

Ok let's see where to begin....a few weeks ago I was sick as a dog with nausea for like 2 weeks. So bad that I could barely eat or drink anything

with out having major dry heaves! I think I ate toast and applesauce and that was pretty much it. My doctor kept thinking it was the pain meds making me sick (which I knew it wasn't) but until I was off of them for couple days he wasn't ruling them out. So even though I still needed the pain meds for my foot/leg pain I stopped taking them for a couple days to prove that wasn't the culprit. When I was still sick he finally agreed to switch my prograf to cyclosporin and once he did that I wasn't sick anymore!

Now onto my leg issues....

The above picture shows a scar on my leg where the ECMO machine (the heart/lung bypass) was attached pre-tx. When I was still admitted in the hospital and both my legs and feet were massively swollen they did an ultrasound on them to make sure I didn't have a blood clot. Well good news was I didn't but there was a pocket of fluid that had formed right under the scar but they said it was fine and should go away on its own.

Fast forward a few weeks and now I am in tx housing doing outpatient physical therapy everyday but still having VERY bad pain in my left foot/leg. Its the only reason I am still having to take pain meds because if I don't its unbearable but the doctors just kept saying work through it its the nerves coming back to life after my leg not having blood flow for a day when I was on ECMO. Fine.

Well two weeks ago I noticed that the pocket of fluid under my leg scar had gotten bigger. It looked like a little football was under my skin so we once again said something to the doctor (like everyday) and finally they agreed that it wasn't normal and got us in to see the vascular surgeon that day. I had another ultrasound on my legs along with a pressure test and after those were done they found out that I had a blood clot in my left leg so I had to start taking coumadin and lovenox. The doctor then wanted to wait a couple more weeks and then have us come back in to see how my leg is doing.

Well that appointment was yesterday and we were totally blindsided to find out that not only do I have to have surgery on my leg but its apparently a pretty big surgery where I have to be readmitted for a couple of days! :( The only good news out of that whole meeting is once I do have the surgery I won't have any more pain in my leg and foot which I am very thankful for. I guess my artery is blocked (once again because of ECMO...do you see a pattern here???) so the doctors have to go in and do an arterial bypass in my leg. That consist of either taking a vein from somewhere else in my body (although I don't have many good ones so I don't know how good an option that is) or using some sort of plastic piece as a fake vein.

All of this we are hoping to get over with rather soon. My mom's FMLA runs out soon and she has to be back to work on Feb. 14th so we are really hopeful that I can go home then too. If not Danny is going to have to take off work and come and stay with me.

Well, I think thats it. I hope everyone has a great weekend! :)

Oh yeah I almost forgot...while I have been here I went to see an audiologist (with my moms insistence!) We went on Thursday and gave them the check and Tuesday I get my hearing aids. I am not to thrilled about the whole idea of having hearing aids at almost 29 yrs old (my bday is Thursday!) but I will let you all know what I think about them when I get them!

Disney on Ice!

My sore throat is gone! Yay! It took about 2 1/2 days to go completely away but now I am fine. I am still on Cipro and have noticed my cough improve a little bit so thats good.

Yesterday, I went with my SIL and niece Delaney to see Disney's Princesses on Ice! It was such a cute show and I was glad Steph asked me to go with them. :)

Princess Delaney!

Today Danny is working in the yard again putting up a fence to block off the area where we keep out trash cans and stuff. I swear we will NEVER be done....

Next week I have a Shands appointment. All the usually test have to be done six minute walk, Pft and labs. So it will be a long day! I will let you all know how I do when I get home.

Have a great week!! :)

Hearing

Sorry its been a week since I posted last. I have been wanting to post about my hearing I just haven't got around to it until tonight!

So, I went to the ENT last Monday and I was put into a little box for my hearing test. IT was two parts, one part where they spoke words to me and I had to repeat them and the other where they do the little beeps and I have to push the button when I hear it.

Now I must say that between the ringing in my ears I already have and my pulse O2 tank I found it very difficult to hear the beeps. It seemed like every time I took a breath and it made the noise to pulse in my nose is when they were doing the beeps so that kind of irritated me.

When I went back in the exam room the doctor came in to read my results. He said that he was surprised that this was the first time I had complained of hearing problems cause according to my test I had severe hearing loss. He also said that the ringing was probably permanent, which is the most annoying part of this whole situation!

Hearing aids at this point are the only way my hearing will come back. But he says as long as I feel I am fine I don't need them. The only time I noticed I have a real problem hearing is when like Danny tries to talk to me from the other room or something. Other than that I am ok.

Maybe sometime down the road I will think about the hearing aid option but right now its not something I am fully ready for. I already feel like an 80 year old caring around oxygen I don't really want to throw hearing aids in the mix! LOL

weekend update!

I hope everyone is having a great weekend!

Wednesday I went to see my CF Dr and of course he didn't see anything in my ears that looked out of place. So he gave me the card of a ENT that I go to on Monday for a hearing test and office visit. Hopefully I will know more info then.

I got a call from Shands Thursday afternoon and when my phone rang I thought I was getting my call but no such luck! They were calling to tell me that the last appointment I went to I guess something funky showed up in my sputum culture so instead of my Nov. 17th appointment they want me to come back Sept 29th. I was in my car when they called so thats why I don't know exactly what they found (cause I couldn't write it down) but I wanna say its some kind of Aspergillus but don't quote me! If it was Aspergillus, I would think they would know how to treat that with out me coming back in that's why im not sure I heard that correctly. But I will let you know for sure once I get back from that check-up!

We rented a bobcat this weekend and Danny and his 2 brothers and his best friend Curt have been outside ALL day today digging up these nasty root systems that are in front of our house left over from some Australian Pines we cut down. The one stump in particular is being a real pain the butt and not wanting to come out! He will be back out there tomorrow working on it too.

The yard is all torn up right now but when its done it's going to be BEAUTIFUL!! I took some before pics this morning so I will post before and afters when the whole project is complete! :)

Went to the flea market this afternoon with my mom, aunt and sister and then we had lunch at a yummy Irish pub. I love some fish and chips and if its on the menu I usually order it. I love seafood but Danny doesn't so I rarely get it at home.

Tonight is my GNO dinner! Its been awhile so I can't wait to see some of my favorite ladies! I am sure I will have pictures to post later. Have a good one everybody!

Ringing, Ringing and more Ringing!!

The ringing is still coming from my ears!!! AAAGGGHHHH!!!

I have been off the Revatio for a week now and no change. I talked to my TX center yesterday and they want me to go to my local Dr so they can look in my ears and see if they notice anything and if he comes up with nothing then they want me to go to a ENT.

I am really concerned that this is gonna be a permanent thing and while its not painful at all its still VERY annoying.

I had posted something about this on Facebook the other day and Piper commented on how she had the same problem and that it was from Tobra.

I used to do inhaled Tobi every other month and then when I was sick I would get IV Tobra. But I stopped doing everything nebs and IV well over 2 years ago because I was starting to show signs of resistance to Tobra and my TX Dr wanted me to become sensitive to it again. So I don't think that is was my problem because my ears just started to bother me this last admission when the Revatio was started.

Well, I hope everyone has a great Labor Day weekend! We are going to dinner tomorrow night with friends and then I think my parents and siblings are coming on Sunday for a BBQ but thats up in the air so we will see!

Goodnight All...

Transplant Check-up

Went to Gainesville yesterday and it was a really good appointment!

It started at 6am with us getting on the road since my appt was at 10. My whole check-up was a breeze yesterday since I had no test or labs. So all I had to do was give a sputum culture and see the Dr.

When the Dr came in I told him all about my recent hospital stay and my pulmonary hypertension (which he already knew about from my Pulmonologist at home) and he informed me that my number has gone from a 41 to a 43 and that I am 4th on the list for my blood type. But he said that doesn't necessarily mean I have to wait for 3 people to get lungs because the 3 people ahead of me have smaller chest cavities than I do so if a bigger set of lungs come in they couldn't use them so it would go to me. So it could be anytime now....

I have been having real bad ringing in my ears which I thought was from the diuretic, so my transplant Dr told me I could D/C it since I wasn't swollen anymore. Yesterday morning was my last dose of it and I still have the ringing tonight! I am starting to think it is the Revatio that is causing it. But since that med is for my Pulmonary Hypertension I don't think Dr. Faverio is gonna stop it. I just hope this ringing either stops or gets lower cause I am going to go bonkers if it doesn't!! :(

Home Sweet Home

I got home last night. It was SO nice to sleep in my own bed and to be able to sleep through out the night with out any interruptions!

I had a little trouble with my new prescriptions at the pharmacy last night. I am now on Revatio (viagra) and Aldactazide (diuretic.)

When Danny went back to the pharmacy to pick them both up he was only able to get the Aldactazide because the Revatio needed a pre-authorization from my doctor. Danny asked the pharmacists how much it was, if for some reason insurance doesn't cover it and its $1500 for one months supply!! Can you believe that? That's ridiculous...I called my doctors office this morning and informed them that if they can't get it authorized they are gonna have to find another medication cause I can't afford that!

Tomorrow is my check-up in Gainesville. I don't have any test scheduled but that doesn't mean anything they sometimes make me do a 6 minute walk and PFT's anyway. I will update tomorrow night and let you all know how it goes!

Yesterdays TX appointment

So yesterday was our very long and exhausting day that is my transplant appointment day. My tx center is roughly 3 1/2-4hrs away so depending on when my appt is and if I have test that day we either drive up the night before or we just get up super early and drive in the morning and then drive home when we are done.

Yesterday, my appt time was at 11:30 and I no test scheduled so it was "supposed" to be and easy day. We left my house at 7:00am got breakfast then got on the road arriving in Gainesville a little ahead schedule. We go up in the elevator to the 3rd floor and walk into a waiting room FULL of people. Right there we had a bad feeling it was going to be a LONG day. With my tx center you are either in and out or you wait HOURS...its never in between!

So I sit down they call me back to do my vitals and then I went back to sit with my mom. Surprisingly enough we got called back rather quickly and put in a room. Within 10 minutes the tx coordinator came in and asked if I could do a six minute walk and PFT because if I didn't I would have had to come back in 3 weeks instead of 3 months because your test have to be updated in the system every 6 months or it automatically makes your score a 0 and since we can't have that I needless to say did the test even though I wasn't to thrilled about it.

So I did my six minute walk and did fine but when I did my PFT and I looked at my numbers after each time trying I knew I was a couple of points down from the last time I was there. Which isn't to big of deal because I have been in the same range of numbers for the past 2 years..it goes up a couple and down a couple but basically its been the same.

After all my test were done we went back into a room to wait for the Dr. So the short version of this story is when he came in he looked at my test scores and was like well we need to get you transplanted...and im like well DUH I have been waiting 2 years!! He then had me stand up to see how tall I was (5'4" btw) to see if maybe he could bump up my height which will open up then window a bit of what lungs I can receive.

I know I have said this before on my blog but I have never in my whole 2 years going to Shands knew what my LAS was because I was told back when we started this process that they don't tell you so don't even ask and I think it was Sara who told me...um no Jen you absolutely can know! So yesterday I asked if I could know what my score was and surprisingly he said sure and called the coordinator in right there to look it up. She opened my file and found out that I was at a 37.9. The Dr then questioned why my score was so low and right there in front of us they went into the computer and updated my name and bumped my score up to 41!! So hopefully with that bump in my score I will get some kind of action and actually get my call! How exciting would that be??!!

Once we were all done with the appt we got in the car and headed home. It felt like it took FOREVER but we pulled in the drive-way around 7:oopm and I was exhausted! I didn't even want to cook dinner last night I just wanted to go to bed and watch American Idol and General Hospital. LOL

Overall it was a good day...I don't have to go back till August but who knows maybe I will be there sooner! Keep thinking positive thoughts for me. I know there are a lot of people out there waiting right now but I am ready!! :)

Gainesville Trip tomorrow

Tomorrow I go for my 3 month tx check-up. I have no test scheduled for tomorrow so it should be a fairly quick and painless (not that I ever have pain) trip. Every other trip is when I do the blood work, six minute walk and PFT and I did all that last time. So this trip is mostly a long car ride to be seen for a few minutes and then turn around and drive home.

I am feeling pretty good so I am sure they will say I am doing great and that they will see me in 3 months....story of my life! Oh well its better than being sick so I guess I will take it! :)

On the upside I have been going to the beach pretty regularly and am starting to get a nice base tan going on! I probably would have more color by now if I wasn't such a fanatic about not wanting to burn so I reapply my sunscreen seriously like every 30 minutes. But its better safe than sorry and I don't want to turn into a lobster...and then peel. ewww that's just NOT fun!

I have a full schedule of things planned this week. Dr appt tomorrow, beach or pool Thursday with an eye brow waxing appt at 5:45, hair cut and maybe a few highlights Friday, Friday night dinner at my fav PF Changs for a friends Bday, and then Saturday me, my mom, my little sister and my cousin are driving up to Tampa to see Mary Poppins the musical!! We are totally excited about this and I am sure I will have pictures to share once I get home!!

Well, I hope everyone has a great week!!

Girls Night Out

Well its been a few days since I blogged anything and its not because I haven't had things to say its just because I was being lazy and not uploading my GNO pics to my computer and I knew I wanted to add this great picture to my post! :)



10 of us girls went to the Melting Pot for dinner last Wednesday night and it was fabulous!! 5 of the girls were my girlfriends from high school and 4 are my friends who I have met since I have been with my husband. So it was a great mixture of new and old and everyone gets along great. I swear I haven't laughed that hard in a LONG time...and im sure the cosmos helped! ;)

I did go to the doctor last week and other than a few crackles I am doing good so that was good to hear.

Today there was a fundraiser for Jen's Kids that I went to with my mom. People bought tickets to have lunch and sit at a table with a local celebrity of there choice. It went really well and I met a lot of great people.

I didn't take any of my own pictures but there was a photographer there and she gave me her card so once I get some pictures from her I will post them!

Tomorrow is St. Patty's day and we are supposed be going out tomorrow night. It all depends on what time Danny gets home from work though so we shall see!

Good Night!! :)

Love Weddings!

I love weddings! Everyone is all dressed up nice having a good time and there is love in the air! :)

Our good friends Holly and Eric got married Saturday night and it was beautiful. She looked fabulous, the food was delicious and everybody had a great time! We have a great group of friends and you can pretty much take us anywhere and we would have a good time so its always fun when we all can get together minus everyones kids (which doesn't happen often!)

Here are a few pics from the night!

Us and the Newlyweds!

Me and the Bride Holly

<3>

Me and my BILs Troy & Tony (Love them...they are the best!)

Me and my handsome husband! :)

I finished all my IV meds on Tuesday so I am extremely happy about that! I was SO over having my port accessed and the part of my skin that was under the tegaderm was over it too!

I go back in a week I think to see Dr. Faverio and do a dreaded PFT so we will shall see. Maybe I should take a page from Sara's book and start visualizing the numbers I want now so by the time my doctors appt rolls around it won't be such a dreaded test for me...it couldn't hurt that's for sure! :)

I did get some bad news though at the end of last week. Me along with 10 or 11 other people got laid off from the bank I work at. For the past 18 months (pretty much since I have been activated on the list) they have been extremely supportive and allowed me to work from home via a work laptop and I always in the back of my mind wondered how long that was gonna last and with all the trouble banks have been having in this economy I wasn't to shocked that this happened it just sucks. June would have been my 7th year working there and I feel like this is just one more thing that stupid CF is taking from me because if I was an actual employee who could be a more productive team member and go into work and not be in the hospital every 2 months maybe I wouldn't be one of those people getting laid off. Who knows...all I know is now I have to figure out what I am going to do. I have to go into the social security office Tuesday so we will see what they say. I tried calling on Friday and got nowhere! The phone would just ring and ring and ring and then it cut off....VERY irritating!!

Well its almost midnight...Danny is snoring away and I myself am just starting to feel tired so I should probably go quickly with that feeling before it goes away and I am awake till 2 or 3!! :)

Goodnight Y'all!