Thursday, December 23, 2010

Out of the hospital

For the first time in 65 days I slept in a bed other than a hospital bed!

You would think that it would have been the best night sleep ever but unfortunately that was NOT the case! I still am not able to sleep flat and since I obviously don't have a bed that can sit up I had one heck of a time trying to get comfortable on a stack of pillows propping me up.

Plus I think that coming "home" for the first time in such a long time along with my whole new regimen of meds was a little overwhelming. Plus not having the security of being able to call a nurse if something was wrong was also a little scary. Although I have to admit I haven't really dealt with my meds myself yet. When we got home yesterday my mom was the one who got them all out and in the pill box for the first time...she's so organized with the whole thing I swear she had pie charts and graphs of all that I was supposed to do! LOL

I think its just going to take me awhile to fully trust my new lungs and know that yes I can breath now and yes I am going to be ok. There are just so many emotions that I feel all at once it feels sorta like a roller coaster ride sometimes.

But I made it through the hard part now I just have to do my physical therapy and get strong so I can go home and live my life again. Cause that is what this whole thing has been about to live my life with the ones I love.

Danny and my sister are coming up tonight and the rest of my family will be here tomorrow night so we can spend Christmas together. I am just so thankful to be here and out of the hospital! I hope everyone has a great Holiday and Merry Christmas!! XoXoX

Sunday, December 12, 2010

All by myself....

For the first time in 3 weeks! Danny had to go home yesterday and go back to work so I will only be seeing him on the weekends now and mom just left an hour ago to go shower and freshen up at the hotel.

What a wild and crazy path my transplant journey has come to. I never in a million years would have thought this would be how I got my new lungs.

I don't even remember all that had happened to me I only know what people tell me or I read. The last day I remember is 11/28 and then the next thing I know I am being wheeled in for my transplant on 12/1 with my family waving at me down the hall.

Everyone in the hospital is calling me a miracle. They can't believe at how sick I was and how wonderful I am doing now.

I am having a little problem with retaining fluid in my legs but we are dealing with that and I am getting stronger everyday!

It so amazing to finally be on the other side of the fence. I waited SO long and watched so many people get there lungs ahead of me I thought my turn would never come. But the big guy upstairs had it all planned out and I got my lungs right when I was supposed to and straight from the surgeon's mouth "they are the best lungs" he has ever seen! :)

So thanks to all who kept tabs on how I was doing through the whole process. The thoughts and prayers where definitely answered and I am truly grateful.

Saturday, December 4, 2010

Surpassing All Odds

Jennifer has continued to surpass all odds. She is a fighter - we knew that - but now everyone who has either worked with her directly or heard about her here at Shands knows that too! She pushed herself to sit in a chair yesterday. She is still on 2 PPM of nitric oxcide and they have her down to 40% oxygen on the ventilator. Her heart rate and blood pressure have now come way down since pre-surgery. Of course she is being hard on herself - she wants to be further along in her recovery - walking down the halls - but we're not there yet. Her legs are very weak both from being in bed for so long (5 weeks at Health Park before coming here) as well as being on ECMO. She also still has all 4 drains in - but little by little other things are coming out. Her doctors and surgeons are very happy with her progress. Thank you everyone for keeping Jennifer uplifted in prayer. Please continue to do so - Jennifer is proof that miracles do happen!

Thursday, December 2, 2010


I apologize for not keeping Jenn's blog up to date lately, but we have been going thru some pretty scary times these past few days. After my last post, Jennifer starting having a much harder time keeping her CO2 levels from getting too high - the vent was good for giving her oxygen, but her lungs were so bad that they couldn't expel the bad gases. This would make her "loopy" and much more concerning was the effect that the high CO2 levels would have on her kidneys. If they started to fail, it would have been a deal breaker for transplant. On Monday morning (11/29), she was literally gasping her last breaths. Her doctor decided to put her on a heart lung bypass machine (ECMO) to buy us time - 72 hours. During the surgery she had cardiac arrest - it took 12 minutes to resuscitate her. There was also complications with her left leg - because she is so slender her artery ruptured when they were securing her to the machine. She not only had a big bleed from this, but it left that leg with no blood flow. We were told that there was a good chance that she would have brain damage - again another deal breaker for transplant. Miracle #1 - no brain damage! They went back in and rerouted the tubes in her left leg to restore the blood flow. Miracle #2 - no nerve damage - perfect left leg! At this point Jennifer was elevated to #1 on the transplant waiting list. Her doctors turned down 2 opportunities because they weren't good lungs and because Jennifer had responded to the ECMO machine better than they had expected. Problem was - she still need lungs and time was running short. I am relieved and happy to announce Miracle #3! Jenn went into surgery last night (12/1) at 10:25PM to receive her new lungs! She came out of surgery this morning at 9:45AM. The surgeon told us it was a very tough surgery. Her lungs were the worst he had ever seen - however her new lungs are beautiful! The next 48 hours are critical - please keep her uplifted in your prayers. Prayers have brought her this far and I have faith that they will carry us through the difficult road ahead. Praise God my beautiful daughter has been given the opportunity of enjoying life - something none of us should take for granted.

Tuesday, November 23, 2010

Update #3

Jennifer is amazing! Only a few hours after her tracheotomy she was able to drink from a straw! Her doctor has removed her nasal tube and she will be allowed to eat soft mechanical food. Just this morning we were told that possibly tomorrow they would allow her to try a small piece of ice. Right now she's doing good watching one of her favorite shows. Tomorrow will be the start of something new - physical therapy - getting up and getting in shape for transplant.

Update #2

It's almost 2:45pm and I'm sitting with my beautiful, brave, resilient daughter Jennifer who is resting after receiving her tracheotomy. I like finding positives out of negative situations. So, I feel happy to get to see her face again! She only has a nasal tube which hopefully will come out tomorrow or Wednesday. I'll keep you posted.

Transplant Update

Hi - this is Heather, Jennifer's mom. She wanted me to post an update letting you know what's been happening with her. You probably know that she has been in the hospital for a long time now. It's been 5 weeks and she hasn't gotten any better - only worse. Sunday her doctor called Danny and Kevin and me and told us to come over to the hospital - that he wanted to talk to us in person. Right away I was so upset! When we got there he told us what we already knew - she wasn't getting better - there wasn't anything else that they could do to make her better except get her transplant done. The plan was to take her by ambulance the following day (yesterday) up to Shands where she would be admitted and stay until they had a donor. Yesterday morning they put her on a ventilator and flew her up to Gainesville. She is now number one on the list so we pray that her new lungs will come very soon. This morning at 11:00 she will have a tracheotomy done so that they can get the tubes out of her throat and get her moving around again. Danny and I won't be leaving her side. I promise to keep you updated as things happen. Please keep her in your prayers - we love her very much.

Thursday, November 4, 2010

Half way there...

Well its taken 2 weeks but the other day I FINALLY started to feel better thanks to some 3% saline treatments! Along time ago I used to do 7% hypertonic saline treatments but they would cause me to have horrible bronco-spasms and wheezing so I stopped doing them. With this admission I was finding that my left upper lobe was just not getting the junk out on its own no matter what I did so my doctor suggested I try the 3% to see how well I tolerated it. Luckily it went well and almost instantly I was feeling less sticky in my lobe and I was able to clear the mucous out easier! Have I mentioned that I love my doctor and am thankful he is back?? :)

Yesterday, I had another interview with the newspaper for Jen’s Kids. I think its gonna be a really good article I am just going to have to get used to the fact that they want to take pictures of me with my oxygen on to put in the paper. I know that thats really me but I just hate the fact that I even have to wear it all the time let alone be put in a paper that everyone in the town I grew up in is gonna see. I guess that’s just me being vain but I can’t help how I feel.

I got to go out on pass on Sunday. I went with my SIL and we got pedicures and I got my haircut. It was so nice getting out of the hospital for a little bit and the pedicure was complete bliss! Definitely what the doctor ordered.

I missed Oktoberfest this year which was a huge disappointment but hopefully this time next year I can go and not be on O2!! Let me rephrase year I WILL be going without oxygen!!

Well, I guess that’s all I got for now. Monday is 3 weeks I have been in the hospital but I have strong feeling that I won’t be going home then. Especially since the whole first week I was here was basically a joke thanks to the Dr who shall remain nameless. But we shall see.

Have a good weekend everyone!!!

Thursday, October 28, 2010

Finally Feeling Better!

I spent a week with the Dr who shall remain name-less not getting better at all. When in swoops my wonderful Dr on Tuesday tweaked a few things and had me on the path to feeling better almost instantly. Its amazing how having a Dr who knows you and cares to listen what you have to say can have such an impact on how you feel! I truly am blessed to have the CF Dr that I do!

So I am on 3 different abx, 3 days of VERY high steroids, breathing treatments every 4 hours and I just started taking Zen Pep instead of Pancreacarb Ms-8 while in here too. Anyone else on those? I had an overstock of Pancreacarb at my house so I was trying to use all those up before I have to buy the new med but in the hospital they only have the new stuff so we have been trying to get my dosage right. Apparently I am on a "lower" dose than most CFers, I use to take 4 Pancrecarb Ms-8 with meals (or 24,000 units) so thats what's new with me.

I have a newspaper interview that I am doing on Monday from the hospital for Jen's Kids. The 2nd and 3rd rooms are almost complete! Very exciting stuff!!

Well that's all I got for now...sorry that's what a week and a half of the hospital does! Have a great Halloween weekend and everyone stay safe!

Thursday, October 21, 2010

Am I being ridiculous?

Well for those of you who don’t know. I was admitted on Monday like I predicted! I had a horrible night of no sleep Sunday night so first thing Monday morning I called my doctor.

Of course as my luck would have it, he was leaving the very next day to attend the CF Conference for a whole week! Ugh! Well I knew I couldn’t wait a whole week for him to return and I didn’t want to chance getting even sicker so I was admitted and will be seen by the Dr who is on-call. Which happens to be the Dr I have had issues with in the past and who isn’t my favorite person in the world to begin with. :(

So, I have been here 3 days and already I have some please let me know if I am being ridiculous....

Like I said I have been here 3 days and I have only seen the Dr once. The other two times I have been seen by a Physician Assistant STUDENTS. Now I have no problem letting a student come in and do there thing but I would still expect to be seen by the Dr.

Especially because today I was having a little bit of the SOB come back. My nurse told me that the Dr would be back in the afternoon so I could see him then and let him know how I was feeling.

Well around 7:30pm the nurse comes in and tells me that the Dr had ordered a chest x-ray for the morning and some PRN treatments if needed but that he wasn't coming in to see me. I mean WTF?? I felt like I wanted to cry.

I am here to get better but if he never actually comes in to see me what’s the point of being here? And its not like these are PA students who are like almost ready to graduate they still have like another 10 months to go out of a 2 year program!

I just don’t want to be here all week basically twiddling my thumbs waiting for my awesome, wonderful, caring super Dr to be back when I could be getting better instead!

Please tell I being ridiculous? and if I am not being ridiculous what should I do? I don’t want to say something and then have him be rude to me the rest of the week cause god forbid I make him actually come in and do his job! Grr...he makes me so mad!

Sunday, October 17, 2010

I think its almost that time...

Yesterday and today I have been feeling a little more SOB than usual. Its almost at the 2 month mark of me being off abx so its not unusual that this is how I am feeling. It just sucks that its like clock work...

I have been feeling so good lately too. I have been going to yoga, I have been out almost everyday with my SIL "window shopping" (wink, wink) cooking dinner every night, doing all my treatments like usual so why oh why do I have to wake up and feel this way? and why can't I stay out of the hospital for more than 2 months??!!

I had planned on going into the hospital Nov. 1st that way I was for sure out by Thanksgiving and Danny's birthday and I would be well through Christmas. Plus I have plans the next couple weekends that I really don't want to miss so me not feeling good is totally cramping my style!!

I know, I know...if I don't feel good I shouldn't push to stay out because that never goes well so I will see how I do today and tomorrow and if I have to call the doctor I will. Just know that I won't be happy about it! :(

Anyway..other than that I am totally loving the cooler weather (when I say cooler I mean its 78! lol) and the lower humidity we are having here in SWFL! I can't wait till we can bust out the sweaters and have some bon fires!! :)

Thursday, October 7, 2010

Lung Transplant Center Party

Its already almost been a week but at least my post is better late than never!

Last Friday my mom and I went back up to Gainesville (after being there Wed for a clinic appointment) for my transplant centers 16th anniversary celebration. We drove up for the party that was from 2pm-6pm stayed the night in a hotel (its a 4hour drive from my house) and then woke up the next morning to come home. Needless to say I was pretty much exhausted all weekend from the trip!

I was a little apprehensive about going and im not sure really why. I mean I love all the wonderful people I have met and talk to through my blog and you guys have been tons of help to me in any of the questions or concerns I have brought your way but still I wasn't to excited about going. But my mother thought it would be good for us so up we went!

When we first got there they had guest speakers talking about all the different experimental things they have in the pipeline as far as lung transplants go and its all very exciting stuff! I will have to see about getting some of the pamphlets from my mom and maybe doing a couple post on them.

After all the speeches were done they had food and drinks and everyone kind of mingled around and talked. I met some really nice people who all have had there transplants at Shands. All of them gave me some "pointers" on what they thought the hardest part of surgery was, what to expect etc. This one gentleman in particular I was really impressed with looked like he just stepped off a golf corse (you know polo shirt, khaki pants, shinny silver hair, sun-kissed skin) he looked FABULOUS and he was 10yrs post-tx!!

I also met a girl there who is around my age with CF and she just had her tx like a week or two before. The crazy thing about her story is after we were talking for a bit we found out that she not only lives like literally 2 minutes away from me we also have the same hair dresser! Small world, right?

In the end I am super glad my mom pushed for us to go. It was really nice. Oh yeah...and I won a necklace and earrings in a raffle and I never win anything!! :)

This week has been ok health wise. I finished my 14 days of Cipro. My cough is better but I am still slightly more SOB than usual. I just started for the first time in years Tobi so maybe that will help!

OK..have a few more good days of the week and a great weekend!!

Friday, October 1, 2010

Food Do's and Don'ts!

Wednesday was my clinic day at Shands. My PFT scores were down a little bit but pretty much stayed the same. My Dr says my name has come up since my last call several times but nothing ever good enough to give me a ring. So I still wait....

While I was there I asked the coordinator if I could have a booklet of do's and don'ts for post tx. I got one when I first came to the center back in 1999 so I figured they had new/updated material since then and I was correct!

Just the other day or week or something I was reading one of Piper's FB statuses and it was all about her tx center not wanting her to use the subway (she lives in NYC) for the first year post tx so I wanted to know what my centers rules were.....especially for food!

I know no sushi (raw sushi) and I know no buffets/salad bars, for good reason...I mean I love me a good buffet but have you seen some of the people who go to buffets? Yeah THATS why I can't eat at buffets post tx! LOL

But does that mean if I go to say Outback for dinner and the waiter asks me soup or salad I forever and always have to choose soup? Cause that's what my center says! I mean part of the reason I love Olive Garden is because the salad is the bomb and Danny LOVES to eat at Jason's Deli (salads, sandwiches etc.) can I never go there with him again?

I mean I know if it came down to it and I had to choose living/breathing or a salad I would rather breath every time and something as stupid as eating a salad isnt that big of a deal but its not the only thing....

I like my meat cooked medium rare. My center says at least Medium...which I think I should be grateful for because I think I saw on another centers website they say well done and I would HATE that! The one thing I will miss the most is seared tuna....they say that is a definite no no. I think I should start eating it every week until I get my tx! :)

The booklet I have is kind of general too so I guess I am just worried about not doing everything exactly perfect.I know at first everyone is really strict and over time you learn more of what you can and can't do I just don't want to mess anything up and if that means no more seared tuna than thats what I gotta do!

On a side note, my mom and I are heading back to Gainesville today. They are having their 16th Anniversary of the lung transplant program. Shands also just received a MILLION dollars from the state of FL for lung tx research so there will be a Senator and State Rep there giving speeches about that.

Well, I need to pack my crap mom will be here in a couple hours! Have a great weekend everyone!

Sunday, September 26, 2010

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!! :)

Thursday, September 23, 2010

Not feeling to hot

Yesterday I woke up with a sore throat. I haven't had a sore throat in years and it all came rushing back to me on how painful they are! I can't swallow, cough, talk or eat with out being in pain. Hopefully it doesn't last much longer.

I called my doctor and told him I was feeling a little under the weather and he started me on 14 days of cipro so hopefully that helps.

I am hoping I feel better by Saturday because I am going with my SIL and niece to see Disney's Princesses on Ice. :)

In a couple of days it will be a whole month since my "dry run." I kind of thought I would have had another call by now. I just hope I don't have to wait to much longer I am ready to get this show on the road!!

Sunday, September 19, 2010


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

Saturday, September 11, 2010

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!

Friday, September 3, 2010

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...

Sunday, August 29, 2010

Home again...

Well I am home again. Got here around 11:00pm last night. Did my vest (first therapy I got all day, it never occurred to any one in the hospital to give me a breathing treatment or anything while I was in the hospital for 12 hours waiting!) ate a bowl of ice cream then snuggled in my blankets and went to sleep and didn't wake up until 11:45 the next day! I was exhausted!

I then did my morning treatment routine, went to a late lunch with Danny and his parents then went home and took a short nap before getting up and getting ready for some of our friends to come over for a game night. It was tons of fun and I really enjoyed having everyone over. Tonight marks the first night EVER the boys actually won fare and square without cheating, so it was definitely a night full of laughs. We played Trivial Pursuit: 90's Edition and we always play any game boys vs. girls. We have way to many couples to just play couples vs. couples...there is never enough game pieces to do it that way. Plus its always fun to battle between the sexes! It definitely gets loud thats for sure. :)

Tomorrow we are going out shopping for all the things we noticed we needed and didn't have for my dry run yesterday. I guess that is the positive thing that came out of being able to go home, we will be more prepared next time. I know I had 2 1/2 years to prepare for yesterday but until I actually went through it I had know idea really what I would need until I went through it....even though I was told by other CFers who have already been down this rode. Now I know first hand the things I will need!

I wish I could say that the moment I heard it was a no go because one of the lungs had pneumonia I had a happy thought that at least another family was going to receive a wonderful gift but I didn't. I just cried (for the first time that day though!) because I was really sad that I had been there for 12 hours and now I was going home and I kind of feel bad that my first reaction was to feel bad for myself....

Hopefully the next call won't be to far off behind this last one. I was really liking the idea of being able to have my surgery and be home in time for Thanksgiving and Christmas!!

Well all, I am going to finish my vest and hit the sheets! Good Night!! :)

Friday, August 27, 2010


Unfortunately we just got some very bad news. The transplant has been called off because there is pneumonia in one of the lungs. Jennifer is upset and so are we. However, I know that everything has to be perfect when it's her turn and she will have her turn very soon.
I love you Jenn,


The nurse just came in and said that right now everything is looking like a go! They are anticipating the surgery to start around 3:45pm.

I got my call!

This is Jennifer's mom - I'm going to be helping update this blog for her. She got her transplant call at 1:30 this morning and we made it to Gainesville by 5:30. We are now in the cardiac intensive care unit waiting to hear if the lungs are good for transplant. I'll post another entry and let you know as soon as we know.

Thursday, August 26, 2010

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!! :(

Tuesday, August 24, 2010

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!

Wednesday, August 18, 2010

Almost There!!

Less than a week to go and I will home and IV Free!!! WOOO HOOO!!

This will be my 6th and final week on abx and while I am feeling better and my PFT's are actually higher than they have been in like 2 1/2 years (only by like 5% but hey I will take it!) This hospital admission hasn't come without its problems.

It started out with my blood work being all out of whack because of the merrem. But a change of abx helped that out and got me on the right track of feeling better.

About half way into my stay we noticed that I was having some elevated blood pressures. So my doc had me get a EKG and an Echocardiogram. The EKG came back fine but the Echo showed that I have moderate Pulmonary Hypertension. Which if left untreated could cause the right side of my heart to become enlarged. As of right now my heart is fine but I am now taking a med 3 times a day to help and you are never going to guess what it is....VIAGRA!! LOL Apparently Viagra was made to help heart patients originally and it was an accident that they found out what other side effect it has in men...

One of the main symptoms of Pulmonary Hypertension is SOB. So once I started taking the meds my breathing eased up almost right away.

I go to Gainesville Aug. 25th and they are already aware of the hypertension (my doc called them last week to see if they wanted a cardiocath done) which will more than likely raise my score. So while its not a good thing this developed its good that it will raise my score.

The last couple of days I have been taking a diuretic because I was retaining a little bit of fluid so I have been peeing like crazy. I usually have an awesome bladder so this is highly annoying!

This hospital stay has also been smooth as far as nursing goes since I have my "primary care nurses." I basically gave them a list of nurses I trusted and they made them be the ones to take care of me. So I haven't had any issues which is a nice change! :)

I can't wait to get home to Danny and Brodie...I hope these next few days go by fast I miss my boys!

Friday, August 6, 2010

New Room

Here are some pictures of the first completed room by Jen's Kids!! I am so happy its finally done and I think it turned out wonderful. I LOVE the wall color the most...I think the overall feeling of this room is just warm and cozy and much more inviting unlike the cold rooms from the previous post! So I hope you like it and let me know what you think!! :)

the door/"rain" windows to the hallway

The new pull-out couch/window and the bathroom door

New closet/wall unit/TV

Notice the cool fiberoptic lights on top of the wall unit...they change colors. :)

Old Room

When we started the first room renovations for Jen's Kids, I didn't get before pictures taken. But I did take snapshots with my phone of the room I was in before moving to the new room yesterday afternoon and since all the rooms look the same I figured its the next best thing so you all could see the changes we have made!!

This post I will show the old room decor and then I will post the new room renovations in another post.

the door/windows to the hallway

window to the outside/little bed for parents to sleep on

TV cabinet, sink and the lower right corner is a table/chairs

looking straight on from the bed

Pretty plain looking I know. This is all the original decor from like 20yrs ago so it definitely needed refreshing! :)

Thursday, August 5, 2010

feeling better

Monday afternoon I was re-admitted into the hospital after trying home IV's at home for 2 weeks without much change in the way I felt. I did 10days in patient and two weeks at home and I still didn't feel up to par so I decided to come back in because clearly what I was on wasn't doing the trick! At home I was on Merrem, Fortaz and Amikacin.

On Monday when I got to the hospital my Dr switched my IV abx to Merrem, Cipro and Azactam. Plus I am doing Colistin breathing treatments twice a day.

On Tuesday some of my lab work came back saying that my liver enzymes and my eosinophil levels were high, which he thinks is from the Merrem so he discontinued that all together.

On a cool side note...the first room that Jen's Kids remodeled was finished today so they moved me into it and I am officially the first patient to use it! Its SO nice, I can't wait till they finish all the rooms its such am improvement! :)

Other than that I am just trucking along trying to get better. Oh yeah, my family is coming up here tonight so I can say goodbye to my little brother. Him and my parents are leaving on Saturday to take him up to Ohio for college. I am probably gonna cry cause I am a big fat baby but we are all going to miss him! :(

Bye Jordan I hope you learn lots and I can't wait to see you at Christmas! I miss you already....thank goodness for Skype so at least we can keep in touch that way! Love You!!

Sunday, August 1, 2010

Front Entryway

Christmas will mark the 3 year Anniversary of us being in our house and it is just now starting to feel put together like a real house. Anybody who owns a home knows it takes awhile to get it the way you like it because unless you have an endless cash supply (which we don't) you can't just go out and buy everything you want in one day. Plus if I am being honest I am not the greatest at piecing things together!

I have always known that in my my front entryway I wanted some sort of table/mirror combo but both are pretty expensive plus I never saw anything I just had to have. Well, a few weeks ago I noticed JCPennys was having a great sale (I go on there periodically just to window shop) and one of the tables I had been eyeing was lowered quite a bit so I knew I had to snag it before it either went out of stock or the sale was over.

Then once it was delivered and Handy Danny put it together I went on the hunt for the perfect mirror. I didn't know exactly what I wanted but I knew once I saw it I would! My SIL and I found the mirror and the two accessories at Pier 1....LOVE that store! Everything in there is super without further delay here is my new and improved entryway...its not done but it is a major improvement to the blank space that has been there the last 3 years! :)

p.s. I am being re-admitted tomorrow when ever the hospital calls me and tells me there is a bed available. Lets hope nobody screws up this time and its a relatively calm admission and I am in and out in no time! :)

Saturday, July 31, 2010

Sweet 16

This past week my baby sister turned "Sweet 16." I can't believe she is 16 already, I remember just like it was yesterday when my parents told me I was going to have another little brother/sister. I also remember praying it was a little sister because I already had 2 little brothers and did NOT want another one! LOL I was there in the Dr's office when mom had the ultra sound and we found out together that I was gonna have a sister and we both were thrilled! So, I hope you had a great birthday my Messy Jessy...I love you! :)

Danny & I

Opening a little Blue Box from her Big Sis!

Me & Jess

On a side note I definitely think I will be going back in the hospital on Monday. I would rather go back in for a week and be good and healthy then stop my antibiotics and have to be re-admitted in a month anyway because I stopped to soon.

Also, I think part of my problem why I haven't felt better while being home is because my home nebulizer compressor hasn't been working properly so it wasn't smoking like it should have been! I just realized that yesterday...jeez! I am all good now with a new compressor but its like I have been doing no treatments for the last week and half. Ridiculous!

Tomorrow I am going shopping with my mom. Hope everyone has a great Sunday! :)

Wednesday, July 28, 2010


Today I had to go to the hospital as an outpatient to get my port re-accessed and the dressing changed (happens once a week.) I usually never have to do this because I have wonderful nurse friends who come to my house and do it for me but they were both busy today and I needed it done, so in I went!

I could have home health come to my house and do it...but believe me when I tell you that was a SCARY experience I never want to have again. The nurse new nothing about accessing a port, down to she touched the needle itself with her BARE HANDS!! Um...hello ever here of sterile precautions when dealing with a medi-port? Jeez...needless to say I don't deal with home health anymore I do everything myself. Maybe that's why I am so tired all the time?

Anyway, once I was done at the hospital I decided to pop into my Dr's office since it is right next to the hospital to see if he could just take a quick listen to me since I am still not feeling to great. It just so happened that it was my lucky day and there was no one in his office and it was a clinic day too! So he actually gave me a full check-up which was really cool since I just showed up.

He says that I have a little bit of wheezing in my right upper lobe and a few crackles in both my uppers which is where I usually have my congestion. He ended up giving me another inhaler to do twice a day like the Advair hoping that will help out without me having to go back on prednisone since today was my last day (thank god!)

We both agreed that if by Monday I am still not feeling up to par I need to be re-admitted to the hospital. I am kinda bummed about this so please think positive thoughts that the next 4 days these antibiotics preform some sort of miracle and I miraculously feel a million times better or its back into contact isolation I go....oh joy.

Monday, July 26, 2010

One more week...

Boy did I call it. One more week of abx for me!

My doctors office called me this morning and said that yes I was to continue with home IV's and oh btw I needed to get to a lab by 4:00 to get drug levels and a bmp done.

Well that's all fine and dandy except Danny took my car to work with him today because we thought I didn't need to go anywhere (my Honda gets WAY better gas mileage than his Ford Lightning SVT!) today and oh yeah he had his keys too!

So I had to call my super awesome SIL and she came and saved the day and took me to get my blood drawn. When it comes to SIL I have to tell ya I got lucky in that category! Stephanie is there every single time I have needed her and I don't think I will ever be able to "re-pay" or give back all that she has done for me, even though I will try! :)

Anyway...I hope this last week of abx does the trick. I need to start feeling better already!!!

Sunday, July 25, 2010

800 Days

Today my little counter on the side of my blog says that I have been listed for a double lung transplant for 800 DAYS!!!

I would never have guessed in a million years that I would be waiting this long. I have to believe that 2010 is my just has to be. If not I am likely to loose my mind!! No not really, but it sure feels that way sometimes.

I am just ready to FEEL better.

Last Night

Last night we went to dinner with a big group of friends. We ordered and ate WAY to much food. The restaurant is served family style so everybody has a little bit of everything. The waiter said the small order fed 2-3 people while the large order fed 5-6 people.

We had 2 tables sitting next to each other full of people, but our table had 8 people (4 couples) so we decided to order 4 large dishes...each couple picking a different dish. Figuring with what the waiter told us that was appropriate.

We ordered Lasagna, Chicken Carbonara, Spaghetti w/meatballs and Chicken stuffed with prosciutto and cheese with a pesto sauce underneath. All fabulously delicious but to much....the Lasagna and Chicken needed to be large and was all eaten, but both the Spaghetti and Chicken Carbonara came out in humungous bowls. They were so big that we all took some of each home and thats after all of us eating some of it too. We definitely know for next time we can order smalls for that stuff!

I was so full by the end I could barely breath or move and was on total carb overload I could have gone to sleep right there! LOL But it was another great night with great friends so it was worth the gluttony for one evening. :)

Here are a few pictures from last night:

The girls

Me and my fab SIL Stephanie

Me & Danny :)

Today, I think Danny and I are going to run a few errands but other than that just hang around and relax. Right now my awesome husband is downstairs making me breakfast while I sit here and do my treatments...I can smell the bacon...YUM!

Saturday, July 24, 2010


Well its Saturday and I am supposed to be done with my abx either Monday or Tuesday (can't remember) but I don't think that is going to happen...

I called my doctors office yesterday and of course my doctor wasn't in the office. I love my doctor and wouldn't trade him for anyone in the world but man does that man seem to take a lot of vacation days!!

Anyway I get side I called his office yesterday to tell him that I still don't feel 100% and that I think I need to continue my IV's at home for another week. So I am waiting to hear back from him on Monday to see what he is going to do.

I know he will keep me on abx if thats what I think (he is really good about listening to what I think) is necessary, I just don't know if he will keep me on the same abx or switch it up since after 2 1/2 weeks I am still not better...maybe I need another drug cocktail or something to kick this bugs butt!

I have one more day left of prednisone, hallelujah!! That day couldn't come soon enough I am about DONE with it. I am ready to stop being puffy/moody and I am sure Danny is too! :)

Tonight we are going to dinner with a big group of our friends. We are going to Buca di Beppo its an Italian restaurant served family style. Kind of like Carmine's in NYC if anyone has ever been there (I have its delish!!) So I am sure I will have pics to post later.

Have a good weekend everyone! :)

Wednesday, July 21, 2010


Look at my new cell Phone!! I guess the saying is true...once you go Mac you don't go back! :)

Within the last month I have got my Macbook Pro (which is awesome!) my ipod touch, and now my new iphone (3GS....still to many problems with Iphone4!) Its to bad I had already had a Barnes & Nobles Nook before the Ipad was out! Oh well...On a side note, I am down to 25mg of prednisone today...woo hoo!!! LOL

Sunday, July 18, 2010

Im miserable...

I am so glad to be home but I am so PUFFY because of the prednisone I am miserable!!

Tomorrow is my last dose of 50mg and then I start to tapper down the dose and I will be completely off them by the end of the week. It can't come soon enough...I usually don't get all the weird side effects that come with being on Prednisone because I am never on it long enough (more than 10 days give or take) or on that high of a dose to really cause a problem. I have never had the mood swings or anything like that.

Until this time...I was on so much solumedrol in the hospital (I was getting it every 6 hrs) and now the prednisone at home, I am finding myself very irritable and annoyed very easily and snapping at my poor husband for no reason! As soon as crankiness comes out of my mouth I realize I am doing it but I can't stop!! :(

My face/eyes are really puffy first thing in the morning and then get a little better as the day goes on but my belly is puffy my hands feel puffy (my rings feel a little tight) just BLAH!!! gonna go now since I usually don't complain like this on my blog....sorry.

Friday, July 16, 2010

Im Home!

After all day of trying to get home health situated because of an apparent Amikacin shortage I was finally discharged at around 7:00pm to go home. Lets just say they are lucky I got to come home because I would have been one unhappy camper if I didn't!

Tomorrow is my mom's birthday so my whole family is gonna come up for dinner and cake! :)

On a little side note...the nurse who gave me the wrong insulin resigned today. I feel kind of bad that she is now out of a job, I didn't want anybody to lose there job but at the same time what she did was VERY serious...I am very lucky I woke up!!

Can you imagine after all these years of having CF, being compliant with all my meds and taking care of myself, waiting for a double lung transplant and the thing that finally does me in is a nurse who can't read a chart? I don't think so!!

Wednesday, July 14, 2010

8 days down!

Tonight marks the 8th day of me being on abx! The good news is my O2 is lowered and I am "good enough" to be discharged Friday afternoon to finish my IV's at home. WOO HOO!! :)

This works out perfectly since its my mom's birthday is Saturday and we had always planned on my whole family coming over to my house to hang out and have dinner. So I am glad I won't miss that!

Still don't know what if anything is going to happen with the nurse who gave me the wrong insulin (read my last post for this info)..but you should see how the nurses are double and triple checking everything they do now. Its kind of funny....but im sure it wont last long. They are all being careful now because something just happened but give it a few weeks and im sure it will become more lax again.

I am just gonna be glad to get out of here and try and shed this solumedrol weight. Sure I have gained weight because I can eat anything in sight...but instead of it being good calories for good weight I am eating because I am starving and ALOT so its going right to my belly! Not a very flattering thing! :(

Oh yeah, and I wanted to ask anyone who has a port or a you still do normal exercising while they are accessed? I usually wait until I am completely done with my meds before I start working out again and I was just wondering if I could go to my yoga class with my port accessed next week. That way I will have only lost 2 weeks of classes and not over a month. Let me know!


Sunday, July 11, 2010

its the weekend...

Well, its been an interesting week for me here in the hospital. The one thing I have been trying to get a hold of the most is my uncontrollable blood sugars due to the Solumedrol that I have been getting every 6 hrs. They have been crazy hi but I need the steroids so what can you do?

Last night I had a little "incident." I take 2 types of insulin Lantus which is the 24hr insulin and Novolog which is the fast acting insulin I take right before meals when needed.

Well last night at 10:00pm when I am getting my bedtime blood sugar checked and my nighttime dose of Lantus (my blood sugar was 117 which was really good for yesterday btw) my nurse says that I was to get an additional 10 units of novolog. I questioned her saying I thought that was wrong and what was my blood sugar from the night before (which it was 211 and I didn't require anything other than my Lantus.) She then tells me that my dr had changed the scale and thats why I was getting the extra coverage. So I said ok and that was that.

Fast forward to 2am when I wake up because I feel very hot and shaky. I grab my glucose meter and check my sugar real quick and was shocked when it came out to be 20! I hit the call light and quickly began to eat some oatmeal raisin cookies Danny had luckily brought me the night before and cracked open a Coke that I had sitting there from dinner.

The nurse came did whatever she had to do to follow protocol and then her and the charge nurse came in to tell me that she was really sorry but that she had read my chart wrong and that she wasn't supposed to have given me the 10 units of Novolog after all. Weird I was right....

Needless to say my Endocrinologist was NOT a happy camper this morning when he came in to see me and he also said that unless they say they have specifically talked to him I am only to get the Novolog at meals just like it said in my chart the whole time.

Do I have to ask the question again of why do the weird things always happen when I am admitted? I mean I guess we can just thank god that it happened to me and not some little kid who might not have woke up or recognized that they were feeling low and eat something. Its just scary sometimes....

Thursday, July 8, 2010

in the hospital

I was admitted Tuesday because I knew last week I was starting to feel crappy but I wanted to hold out till I got back from our 4th of July in Orlando.

Well needless to say I think I waited to long because I have felt like complete CRAP the last 2 days. My x-rays show that I have a few mucous plugs which I already figured I had anyway because I could feel little hard pieces when I coughed a few times (sorry about the tmi there.) So my first night here I was awakened every hour through out the night for breathing treatments so needless to say I was exhausted ALL day yesterday.

Then this morning I awoke thinking I felt a little better but soon after my first treatment/vest I started feeling really tight and my sats weren't staying above 90 and I was on like 8L of oxygen. So Dr. Faverio gave me 100mg of solumedrol IV and treatments every 2 hours and that did the trick to open me up and raise my sats and lower the oxygen. We both think that the plugs are moving up and out and that is what is causing my sob. So hopefully they come out with out anymore trouble and I can get cleared out!

My blood work also came back that I was a little dehydrated and that my electrolytes where low so that was a little weird I have never had that before. So I was on fluids for a little bit yesterday and then today he started me on some pill to help with the electrolytes. So we will see...

Anyway...that's all that is going on right now. I will let you know how I am doing in a few days. My goal is to be home by the 16th because my mom's birthday is the 17th so please think good thoughts that I can be home for that!

Tuesday, June 29, 2010

80's Party

Saturday night our good friend Jimmy had his 30th birthday party...which was 80's themed! Now I love me some 80's (pop) music but Danny really LOVES the 80's. LOL

Whenever there is an opportunity to dress up 80's style my husband is the first one in line to ride that train! If you knew Danny you would know that he loves 80's hair bands with his favorite band of all time being Motley Crue. I myself have become somewhat of an expert on all things hair metal not because I want to but because what choice do I have when I have been dragged to every Motley Crue, Def Leppard, Guns N' Roses and countless other bands concerts that come to our area? I do have to say though that over time I do find myself enjoying them too! :)

Anyway...I digress. So my husband who also suffers from a bad case of pack rat syndrome, doesn't throw ANYTHING away. So when it came time to dress up for the party and my little sister needed something to wear Danny pulled out his box of t-shirts and found his 4th grade Poison t-shirt and VOILA Jessie had a costume and believe me he had a lot to choose from! Now that's what I call vintage!! LOL

We had a blast but it was SO hot that night that my bangs that I worked so hard to stand up (I barely could remember how I used to do them) were flat by the end of the night. :(

Me & Danny

My cousin John...he is hilarious!

Me and Danny again

Danny and Jessie (his jeans are tight-rolled at the bottom too!)

Sunday, was our nieces birthday party. It was fun but Danny hurt his back. They had the party at this indoor bounce house place that kids AND the adults could go in. They have this obstacle course where two people can race and needless to say Danny and his brother were racing and he thinks he pulled something in his back. I asked him what he was thinking....he isn't 20 anymore and probably shouldn't be running around bounce house obstacle courses! LOL Oh well, I think he learned his lesson. I just hope he feels better soon he keeps walking around like he is an old man and only one of us around here can walk around like an old person!! :)

Friday, June 25, 2010

New Macbook Pro!!

Hey guys!! I got a new laptop yesterday and I was playing around with the movie thing this morning so I am just doing a test video to see if I can upload it correctly...

This is my first experience with a Mac computer so I know absolutely nothing! Luckily I bought the one on one session thing so I can go in the store for some lessons because I seriously need them! lol

Monday, June 21, 2010

Busy Weekend

Last weekend was pretty busy for us. Danny's brother Sean had his 30th surprise birthday party Friday night. It was a "Vegas" style party with poker and blackjack tables set up along with a DJ that played great music along with a karaoke machine for all those who dared to get up and sing! That alone was worth going for! LOL :)

Then Saturday night, Danny and I went out to dinner at my one of my favorite restaurants for Father's Day with my family. I was STUFFED by the time we left I could barely move! I do that to myself every time I go there I just can't help myself! I must have eaten 3 loaves of bread alone not to mention my seared tuna appetizer and my dinner, I had no left overs to take home! I am SUCH a little piggy!! Oh well...hehe.

Sunday was Danny's dads day to see us. We went over for brunch and ended up staying over there most of the day. We swam in the pool a little bit and then proceeded to play a game of Phase 10 that NEVER seemed to end! All in all it was a good day though.

Here are a few pics from Sean's party and dinner with my parents:

Mom & Dad

Me and Mom

Me and Danny

Likness Family 2010

Me and my friend Cat

Me and my love :)

Nothing really to report on my end. Still no call. More and more everyday I feel myself getting a little more discouraged with not getting my call. I mean I am doing EVERYTHING I am supposed to. I go to yoga, I try and take the best care of myself that I can, I try and live my life to the fullest everyday despite having to lug an O2 tank with me and I thought I was doing all this with a positive attitude knowing that my time is coming soon but after 2 WHOLE YEARS of waiting and seeing countless CFers be put on the list after me and receive there lungs before me its really hard to not get discouraged and feel like this is never going to happen.

Even though I am over the moon at how well my Cyster Piper is doing (which I had know doubt she would do so well she is a fighter) I can't help but be a tiny little bit jealous because I so badly want to be over that hurdle and also be working on my way to getting my life back! I feel horrible even putting it in writing that I feel this way but its true.

I know that when my perfect set comes I will get the call and I know it WILL happen its just hard waiting. OK enough of the poor me section of this post! I am going to go eat dinner now and watch some boob tube with the hubby....thanks for listening to me pout for a minute! :)

Wednesday, June 16, 2010

Graduation/Birthday Party

This past weekend my parents threw Jordan a combined Graduation/18th birthday party. My dad roasted a whole pig in the backyard (a very redneck but YUMMY thing to do) along with sweet corn on the cob on the grill and a ton of other fabulous food. It was all really good...believe me I had like 2 plates of food and 3 ears of corn!! I was stuffed!! LOL

They had a great turn out with lots of family and friends coming to celebrate Jordan's milestone. The kid made out like a bandit bad my mom is making him save all his money for when he goes to school! I know I know its the responsible thing to do....try telling that to an 18 yr old who just got a load of cash and gift cards!! :)

Good Bye Bears, Hello Yellow Jackets...

blowing out his candles

Jordan and I

So excited to be getting a laptop

Me and my BFF since 6th grade! :)

and of course the old self portrait!

The rest of the week I haven't really done much. I was feeling kind of crappy yesterday and was hoping I wasn't getting a cold that has been going around. A few people I know haven't been feeling good. Even my dog Brodie was sick yesterday, he threw up twice and when he went #2 it was not his normal #2 (dont want to give tmi its kinda gross!) But he seems to be doing better so far today. If he still wasn't acting right today I was gonna call the vet.

Pool day tomorrow with my fab sister-in-law and some old girlfriends (love that I am finally getting some color!!) and then yoga on Friday!!

I also wanted to mention my Cyster Piper who after many dry runs and one "damp" run as she likes to call it FINALLY got her lungs and she is doing great just like I knew she would! She is a real champ and I can't wait till she is fully able to enjoy her lungs and let us all know how great it can be post-tx. Now if I could just get my stupid phone to ring we would be in business!! :)

Tuesday, June 15, 2010

Jordan Graduates!!

Last week my little brother Jordan graduated from high school! Its hard to believe he is that old seems like just yesterday I was 10 yrs old and welcoming into the world my 2nd little brother. Man I feel old...LOL

We are extremely proud of Jordan and we are all a little sad to see him go off to college in August. We are a VERY close family and he is the first one to go to school in a completely different state. But he wanted to play football in college and had to go where the scholarships were being off to Ohio he goes. Oh yeah and did I mention we have lived in FL our whole lives and Jordan has never seen snow? This winter should be interesting for him!! LOL

Our whole family minus my brother Josh (he was walking around)

Me, Jordan & Jessie

The Graduate!! :)

I have already cried when he made the final decision to go to school in Ohio so I am sure once August roles around there will be more tears. But I plan on investing in a web cam so we can skype! I know I am such a would think it was my own kid going to college!

Wednesday, June 9, 2010

3 Wonderful Years!!

Today is my 3rd wedding anniversary to my wonderful husband!! I can't imagine what my life would be like without him.

It just doesn't seem fair that there is only one day a year to recognize the other 364 days of you putting up with me!! Thank you for being the best husband and best friend a girl could ask for. I Love You!!

Tuesday, June 1, 2010

Any advice would be nice!!

So as you all know from my previous post my LAS (Lung Allocation Score) was raised two weeks ago when I went to my tx check-up. With that being said it now has all of us on a little bit more higher alert than say the last 1 1/2 years of nothing happening!

Danny and I keep saying ok we need to get a bag packed so when we get the call we can just go. But I seriously have know idea what to pack! I am at a complete loss on what things I will need and what things I wont need till later on.

So I am asking all online friends out there who are post-transplant to please help. What items did you bring in your bag? What items did you not bring that you wish you had? What things will be most helpful for my time in the hospital and then when I go to the apt?

Anything else useful that I am forgetting please feel free to throw in there! Every little bit helps...I was up all night last night because every time I fell asleep I would dream that I got my call so its making me feel like I am not prepared (mentally yes, packing wise no!) at all.


Sunday, May 23, 2010

Fun Filled Weekend!!

All I can say about Saturday was it was FANTABULOUS...or..."Supercalifragilisticexpialidocious even though the sound of it is something quite atrocious! If you say it loud enough, you'll always sound precocious...SUPERCALIFRAGILISTICEXPIALIDOCIOUS!! LOL Love it!! :)

My sister, me, mom and my cousin Kasey

Me and Jessie

Friday night we went to one of my favorite restaurants for a friends B-Day dinner at PF Changs. I LOVE that place...Seared Tuna and Mongolian Beef...YUMMO! :)

Me & my Love

Again...I like this one better! :)

Today, we just ran errands all day. Got my car an oil change, went to pick up Danny's ring from the jewelers, went to Barnes & Nobles to look at the FABULOUS Nook I am hoping to get for my Anniversary in a couple weeks (hint, hint) and then went food shopping. Now we are just relaxing and cooking some pizza at home. Gonna watch the finale of Celebrity Apprentice in like 20 min...hope Brett Michaels wins it all!! :)

Thursday, May 20, 2010

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 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 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!! :)

Tuesday, May 18, 2010

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!!

Sunday, May 16, 2010


Today I hit the 2 year mark on the lung transplant waiting-list!

I have to believe that my time is soon. Unlike so many of my transplant waiting-list friends, I "knock on wood" have never even had a dry-run.

I fully believe that there is a bigger picture plan out there for everyone and I guess my turn hasn't come yet because if it had I wouldn't have ever come up with the idea to start Jen's Kids and that is something that I am very proud of.

Hopefully (I say this every year) 2010 is my year. I am ready to move on to the next phase in my life and I can't do that until the flippin phone rings!!! :)

I guess whenever you are in the mood to say a little prayer or to throw some good vibes out to the universe, please think of me and that I get my call soon. I would very much appreciate it!

Sunday, May 9, 2010

Happy Mother's Day

Happy Mother's Day to the best mom a girl could ask for!! I know im a little high maintenance at times mom but you are always there for me and your the first one in my corner if I have a problem. I Love you! :)

Happy Mother's Day to all the other mothers out there too! I hope everyone has a fantastic day with their moms...

Monday, May 3, 2010

Week 2 finished!!

Today marks my 2nd week of abx with one more week to go and I am feeling great! I just finished my last dose of prednisone today so I am looking forward to the blood sugars stabilizing a bit and being able to go to sleep at a descent hour! ;)

My first weekend home was fabulous. Friday night Danny and I enjoyed dinner and a movie night in with his parents. We watched The Stepfather, it as ok very predictable though.

Saturday, Danny worked all day and I relaxed at home and then we went to our good friends Cat and Eric's house for there engagement party. They had a pig that they roasted and LOTS of yummy food. I was so glad to be able to attend the party...I hate missing out on things like that because it seems I am always stuck in the hospital!

Sunday I met up with my mom, brother and sister at Coconut Point mall (its in the middle of their house and mine) and we did some shopping. I got some cute shirts from Express but that was it. I have been looking for a long time for a pair of capris but I haven't been successful and with it getting hotter by the day I hope I find some soon...I have been slowly growing out of ALL my old ones! (which is good for the weight gain, bad for the wallet!!) :)

I have to get some blood work done tomorrow but other than that I have no plans. I hope everyone has a great week!!