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!! :)

UPDATE

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,

Mom

UPDATE

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.

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!

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!

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 closet...in 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! :)

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!!

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 awesome....so 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! :)