:(

SO....unfortunately I am STILL in the hospital. Poo!! :(

Today marks day 10 and my doctor still doesn't know when I will be discharged. He is doing a bronch tomorrow to check things out (I already had a biopsy Monday....No Rejection WOOP WOOP!!) and says he will have more of a game plan of when I can either go home home or tx-housing home depending on what he sees and if I can keep my stupid fevers lower than 99 for 48 hours.

As of right now I am on Colistin nebs twice a day, Vancomycin, and Cefepime for the Pneumonia and I guess he says I have a bladder infection too which is weird I have never had one before and I am peeing fine so how would one know if you have a BI...isn't it supposed to burn when you pee?

Oh yeah one quick question before I go. Has any post-tx out there noticed a change in there body temperature since there surgery? I used to freeze any and everyone out of every room I was in cause I had to have the A/C on COLD now Danny complains that I keep it like a sauna because I am always freezing. It's really weird! But hey on the bright side our electric bill should go down! LOL

OK, well im sure once I know more I will post about it seeing as I have not much else to do. I just really, really, really, really want to go home! My little brother comes home this weekend for spring break from Ohio and I am stuck 4 hours away from home. :(

Have a good day guys!

XoxoX

So...good news and not so good news...

On Sunday I woke up feeling VERY congested around my trach. NOT my lungs I just felt like crap was getting stuck in my trach and it was driving me crazy! I was coughing up paper towels full of mucous out of my trach (very gross by the way...you would think after 29 years mucous wouldn't gross me out so much but it does!) Finally I said to Danny should I call my coordinator and of course Danny being Danny says "I don't know"....thanks babe!

So I said for him to grab my thermometer (I check my vitals 9am and 9pm everyday I don't know if that is standard with everyone or not but if my temp is EVER 100 or greater I am to call immediately no matter what time of day) I didn't think I had a fever but I thought I will check it anyway and then decided if I am gonna call the coordinator. That was as 1:30pm and guess what I had a fever 100.4 to be exact! So I called my coordinator and of course they admitted me an hour later.

After x-rays and blood work it was determined that I have a little bit of pneumonia in my right lung. :( I of course was upset I mean I have done EVERYTHING right and worn my stupid mask everywhere how could this have happened? Well apparently I still have Psedomonas in my sinuses and that dripped down into my pretty new lungs and caused the pneumonia. Wonderful.

I was also upset because as you all know I was supposed to go home this weekend and I thought for sure this would delay my home coming by another week or so at least. Well I saw my wonderful Dr this morning and he said that I was going to be released on Friday and that he wanted me to do one more week of home IV's. I said Home, Home or tx-housing home....he says let me think about it.

Well my coordinator JUST called me because she wanted to know who I used for home health cause my Dr wanted her to set up my home health...that means Friday morning I get to go home!!! I haven't been to my house since the beginning of October and I am SO excited you have no idea!!!! :)

So I have to do IV's for a week...big deal I have done them before I get to go HOME!!! WOO HOO!! Thanks to everyone out there who put out all the good going home vibes for me I (and Danny) appreciate it!!!

XoxoX

P.S. Another piece of good news I found out the other day is my dr told me that my latest culture came back that I was sensitive to a bunch of abx which is great news so we can kick this pneumonia's butt! ;)

Almost home free!!!

Saw my doctor today and the game plan is on Tuesday I am going to have a bronch and biopsy done AND drum roll please......get my Trach out!!! WOO HOO!! You have know idea how bad I want this thing out. Three months is entirely to long to have a foreign object protruding from your neck. Very annoying!

If the test results from my biopsy are all clear then next weekend Danny and I are moving on out of here! I can't wait to sleep in my own bed. The bed here in the apartment we are staying at SUCKS! I wake up every morning with a terrible back ache. I know the first night at home is gonna be like sleeping on a cloud...our mattress is awesome and I miss it!

So if you could all think clear positive thoughts for me I would appreciate it. I wanna go home and Danny needs to get back to work! :)

Have a great weekend everyone!

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!