Health Update

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

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

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

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

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

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

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

I hope everyone has a great Labor Day weekend!!

XoxoX

rATG and things..

I know I said I would update up all once my 5 day treatment was over...but once I got home I still had the body aches and slight itchiness that went alone with the drug. So I was in no mood to type an entry. Plus I was on a temporary "house arrest" since the rATG completely wiped out my immune system so I was told to stay aways from large crowds for a while!

I go back up to Gainesville on the 22nd of August to do another bronch and hope that all the rejection is gone! ***Everyone cross fingers***

Then at 1:45 I have an appointment with the vascular surgeons who worked on my leg...I have been having some swelling in my left foot and I just want to make sure everything is all good. So at 1:45 I have a ABIS test done to measure the pressures in my leg and then tuesday morning and 9:20 we have an actual appt with the dr who will go over the test results....and then we will be heading them!! :)

The last couple of weeks have been kind of boring for me being locked in the house and everything but its over now so I am a happy camper! I am eager to get back to the gym couldn't do that the last 2 weeks either so I am sure all the soreness I worked through all ready is gonna be back in full force!! Ouch...

The only other new thing I have been doing is seeing a massage lady once a month to work on my leg/foot pain and the pain I get in my lower back....it seems to be going good. I figure since I have the numbness in my foot/ankle/leg sometimes that the massage is good to getting the circulation moving around those ares again and I am hoping the feeling comes back!

Also, I used to write on this blog all the time because that's all i did was write about things that were going wrong with me. Well now that that has faded I think I am gonna try and change my format a little. I will still update on my health cause u know we all still have our ups and downs there just not as frequent!

So since I LOVE to cook every night and my friends are always asking for the recipes I figured every night after dinner (or lets be honest maybe the next morning) I will post the pictures of what we ate plus the corresponding recipe to that picture! Plus I am in the middle of re-doing some of our rooms so I will post pre and post of those projects as well!!

Well what do you think would you read a semi health/semi cooking/semi decorating blog from me?? Let me know what ya'll think!! :)

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!

One Month Anniversary!!

Today, I have had my wonderful new lungs for an entire month! And while nothing about this transplant has gone easy (but what with me ever does?) I am thankful everyday to be able to sit here and blog to you all, or hang out with my family all while being on no oxygen and not fighting to breath.

Friday was the first day that I ventured out of the apartment/hospital radius and went to the mall. Boy was it nice to not have to lug O2 around with me! :)

The only thing that still really hurts me is my foot and I plan on bringing that up with my doctor tomorrow morning because something has to give. It hurts so bad its holding me back from fully enjoying my new breathers and thats not a good thing....

In case some of you are scratching your head wondering why my foot hurts when I had a lung transplant I will tell you! Before my surgery I was put on an ECMO machine (I was REALLY sick) this gave me a big cut on my thigh where they attached the tubes. This caused there to be no blood flow to my left leg for 24 hrs. So fast forward to after my surgery and now I have horrible pain in my foot!

Other than the painful foot I had a wonderful Christmas with my family and a good New Years too. I can't wait to see what 2011 brings my way!

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!!

Health Update..

I know I haven't posted anything lately but honestly I haven't been in the mood to and the darn Internet at the hospital is so slow its annoying!

Today was 2 weeks from the time I was admitted from the ER. There isn't any more pain in my stomach (thank goodness) so now I am working on getting the old lungs up to speed so I can feel better and go home.

So, the 2 test I had on my stomach came back and they think they have the problems narrowed down.

The first one was to see if my gallbladder contracted like it was supposed. Well shock of all shockers mine is "dysfunctional." They do some sort of calculations to see if your gallbladder contracts like its supposed to with 30% or higher being considered "normal." Mine is 25% so its not that bad that I need to risk surgery.

The 2nd test I had to eat scrambled eggs that had contrast in it and then lay under a camera for two hours so they could watch my food being digested. What they found out is that my stomach was emptying to slow and that's what was causing my pain (they're pretty sure)
so they gave me Reglan via IV while I was still under the camera and my stomach emptied right away. Reglan increases muscle contractions in the upper digestive tract increasing the rate at which the stomach empties into the intestines. So now they have me taking it by mouth 30 min before I eat lunch and dinner. I haven't had any pain since late last week so I'm glad for that.

As for my lungs my Dr just switched one of my abx yesterday and started me on 50mg of prednisone so I am sure I will be feeling up to par soon. I am most likely going home Tuesday so I will be home for my bday but will probably be going home with one last week of IV's.

OK well I am gonna go try and find something to watch on TV...I just finished ALL 3 seasons of Mad Men and now I have to watch normal television again! Thanks Sara for recommending it to me I LOVED it and I am going to have my mom watch it next!

ER Visit

A week ago I started having stomach/back pains but thought it was because of PMS so I just took Motrin and dealt with it thinking it would be over in a few days.

Well when Wednesday came around and by then I was still in ALOT of pain and meds and a heating pad didn't even dull the pain I started to get worried. So by like 9:00pm I knew I wasn't going to make it through the night because I couldn't get comfortable...nothing helped it, not sitting, not standing, not laying on my side I was miserable! So I decided I should go to the ER.

Because it was so late already and I knew Danny had to get up super early for work I called my sister-in-law and she came and picked me up. While on the way to the ER I texted my friend Felicia who works on the hospital floor I usually get admitted to to see if she was working and luckily she was! She also had a friend working in the ER that night so she called downstairs to let them know I was coming in so when I got there I got brought right back and didn't have to wait in the waiting room at all (thank goodness!)

Right away they got IV's started and blood work drawn. I got an EKG done, xrays done, and an ultrasound done. They thought at first maybe I was having gallbladder issues. All while doing this they were giving me morphine for my pain which helped right away.

6 hours later and my wonderful SIL STILL with me they still didn't know what was wrong with me except that my gallbladder looked fine and so did all my other test except that my WBC was up to 25,000. So they called my doc and they admitted me which I figured they might do so luckily I packed a bag and my laptop! :)

Once upstairs my doctor had them xray my lower back and my stomach and then my SIL went home at like 4:30am and at around 6 I finally got to bed!

When my DR came in the next morning he told me that he looked over my xrays and the problem I was having was that I was full of crap...LITERALLY!! So he put me on a full liquid diet for 2 days (I was starving!!) and I had to drink tons of mirolax along with them giving me reglen (sp??) all to help me go...

The weird thing about this whole thing is that I was going fine at home so it shocked me to hear that I was "backed up" but apparently that can still happen in people with CF. I am telling you if something weird is gonna happen to someone...it WILL happen with me!

So now I am still drinking the miralax twice a day (which miralax is just fiber) and apparently its something that I might have to drink all the time now which I am not looking that forward to. Oh well.

In the mean time I was planning on coming in today anyway for a "tune-up" before my birthday so looks like I am here for awhile. I am still having a little bit of stomach pain but its definitely not as bad as it was. I will keep you posted!

Great couple of days!

Well its Sunday and its the end of a great weekend! The prednisone I got from my doctor did the trick and within a few days the pain was gone and I was able to enjoy the weekend and all the stuff we had to do!

Friday night, was my dads birthday but it was also my moms holiday party for her co-workers so they kind of combined the two parties and Danny and I went down to Naples and had a great time hanging out with everyone at my parents house. I made a yummy German Chocolate Cake (my dads favorite) and surprised him since he didn't know we were coming! :)

Danny and I in front of my mom's Christmas tree!

Saturday, Danny and I did a little last minute errands. I went and spent a butt load of money mailing Danny's grandma her Christmas presents out to Arizona. I kept waiting to send it because Danny's brother was going to get her something and throw it in our box and then he kept not doing it so finally I had to tell him he was on his own....hopefully the box gets to her by Christmas. If it doesn't I guess it wouldn't be the end of the world....but if it was up to me I would have had it shipped a week ago.

Saturday night some friends of ours had a Christmas party. I couldn't go to there party last year because I was sick so it was nice to be out and feeling great last night! The weather was beautiful...it was like 50 degrees last night. LOVE IT! Its not often I get to bust out the jacket. The only problem is I was wearing black flats so my feet were freezing by the time I finally pulled my crazy husband from the party at 2am!! :)

Danny and I and his awesome tuxedo shirt! :)

Me, my cousin Jm and Danny's brother Tony

Me and the hubby...

Today, I was up by 9 (that's right not getting home till 2:30am and then I had to do my vest too and I was still up early!) and then Danny and I went and met up with a childhood friend that I recently re-connected with on facebook. It just so happens that her mom lives in the same town as I do now (45min from where we grew up) and she comes up here to visit her all the time. So we met her over at her mom's house and we had lunch and a TON of christmas cookies! Its such a small world sometimes but it was nice seeing her and boy was it funny when she started pulling out the pictures from when we were like 10!! LOL

Anyway...I had a fabulous weekend and I hope everyone else did too. I am getting a little hungry though so I should try and figure out what is for dinner that is going to require the LEAST amount of energy cause honestly I am running on empty! :)

This Morning

I woke up this morning at 6am...which never happens unless I have to get up to do something or go somewhere!

Anyway, so I woke up because I was in extreme pain (my joint pain is usually worse after I have been sleeping all night) short of breath and running a temperature. I got up to use the restroom and thats when I saw my reflection in the bathroom mirror and I noticed the red spots on my arms which where only a few last night when I went to bed had now multiplied to many all over from my elbow up on BOTH arms!

So after I used the bathroom, did a breathing treatment and took an Ibuprofen I laid back down shivering under the covers until I fell back asleep until about 9am.

Once I woke back up I called my doctors office and told them that I wasn't any better than last week and that my symptoms had even gotten worse and now I was getting SOB too. So the nurse called me back after she talked to the DR and they ended up calling me in 7 days of prednisone.

I have never used prednisone for my joint pain before but Piper had wrote a comment on my last post saying that is what she usually gets when she has similar pain/syptoms so I am hopeful that it will help.

**On a side note Piper had asked a question about my red spots so to answer her...no the spots are not tender to touch and dont really hurt at all. Some almost resemble bug bites (some are flat and some are bumpy like bites) but they are never itchy and if I accidently scratch my arm where they are thats when they hurt a little. Other than that they come and go with the joint pain and they are just there.**

Danny just pulled up so I will probably go downstairs and explain to him how to cook the pork tenderloin for dinner since I am still not able to move that well! Hopefully the prednisone that I just took will kick in soon and make me start feeling better. :)

Miserable...

The last few days I have had my "arthritis" type pain again. There isn't any rhyme or reason why I get it, I just wake up one day and im in pain.

It usually starts with my wrist, its a little achy like I might have slept on my arm wrong. Then it gradually gets worse moving up my arm to my shoulders and it almost always is accompanied with red spots on my arm and a low grade temp. Sometimes it even effects my knees.

I called my doctor a couple days ago when it first started to hurt more hoping that he could give me something better for the pain because my trusty 600mg Ibuprofen wasn't even touching it.

Danny was gonna pick the prescription up for me at his office if need be but instead my doctor decided to call in Toradol and its not helping. NOW im stuck at home on a Saturday in excruciating pain and I can't even do anything about it until Monday because even IF my doctor is on-call he wouldn't be able to call anything in over the phone.

IM miserable and all I want to do is feel better and not hurt anymore! :(

Twilight Fever

Well, I held out as long as I could but I have been bitten (pun intended) by the Twilight bug! I finished New Moon a couple of days ago and just started Eclipse this afternoon.

I love these book and can't wait for New Moon to come out in theaters November 20!


CF health wise I am still doing great but I woke up this morning and I have my joint pains again. It used to spring up like once a year and now it seems like every few months my joints hurt and I hate it. The last time I went to Target I was looking at Glucosamine pills thinking that might help but I didn't buy them because I wasn't sure. Does anyone else ever have joint pains and if so what do you do??

doing better

I am doing a little bit better today. My fingers don't hurt anymore and I only have slight pain in my right wrist and my left ankle.

I am going to the grocery store later today to pick up all the ingredients I need for the two desserts I am making tomorrow for dinner at my moms. YUM!

In case I don't post anything tomorrow, I just wanted to tell everyone to have a Happy Easter!! :)

Crappy

The last few days I have not been feeling to great. Nothing lung wise....its my arms. I sometimes get arthritis type pain, it usually starts in my wrist and then my fingers and then my shoulder it even sometimes goes to my knee. It usually last a week give or take a few days I am hoping it goes away soon. I also get red spots on my arm when they are hurting....just another wonderful thing that comes along with being an adult with CF! Trust me when I say, if there is something weird out there it will probably happen to me! :)

picture of my spotty arm....the other arm looks the same.

Other than that I don't really have anything to report. I had a good weekend my mom was here on Saturday and we went out shopping and then on Sunday 2 of my childhood girlfriends came over to my house and we had lunch and cocktails...it was a great afternoon and I can't wait to do it again! :)

Did anyone watch American Idol last night? I definitely think the blind guy has to be going home. He was HORRIBLE last night and I hate to say this but if he doesn't go home I am thinking its because of sympathy votes...does that make me horrible? :(

Not a good day...

So last night I tried the bipap. It didn't last very long before I took it off because it wasn't ramping up right so I was going to fix it today to try again tonight.

Well, as soon as I took off the bipap I felt a little funny when I took in a breath but figured I just wasn't used to the "puff" of air the bipap was giving me. I had kind of had rough night because of the funny feeling and when I woke up this morning my lungs ached really bad. Plus I had a fever.

When I saw the on call doctor and I told him how I felt and thought it was from the bipap he looked at me like I was crazy and said the bipap wouldn't cause me to be achy. But my thought is if the bipap blows air into the lungs so that you take a deeper breath wouldn't it make sense that your lungs would hurt because its not used to opening that much? Just like a muscle hurting after you workout??

I feel better now but it has taken me all day to feel better. I am not using the bipap tonight I am waiting until I see Dr. Faverio on Monday to see what he thinks. I am really afraid to use it and possibly cause something bad to happen. I was feeling better and everything and now my O2 had to be raised today because of my lungs hurting so hopefully tomorrow it can go back down. I will let you know how I do....

Last few days...

So Tuesday was my birthday and it was great. I went to pulmonary rehab in the morning, went to lunch and a movie with Karen in the afternoon (got a gift card to get a pedicure, thanks Karen!) and went to dinner at PF Changs that night.

Bride Wars was AWESOME....I laughed so hard and yes cried too. I cry a lot during movies...but Karen was crying too so I know it wasn't just me! :) That is definitely a movie I will want to buy and add to our collection when it comes out.

Yesterday during the day all I did was work! I used to work a few hours everyday but with pulmonary rehab taking up a big chunk of my mornings on Tuesdays and Thursdays I am finding myself working only on M,W and F so I have to work almost all day to get in all my hours. Oh well. At least I work for an awesome company that allows me to be flexible like that!

Last night while we ate dinner we watched Taken, yes I know its still in theaters but my brother-in-law had it somehow so we borrowed it...let me tell you it was GOOD. I was on the edge of my couch the entire time! I don't want to give away any of the movie explaining it so just take my word and see it, I know you will like it.



BTW....does anybody watch American Idol? Is there anybody anyone has noticed in particular that you think will do well this season? I am just thankful they got rid of bikini girl last night, I wasn't sure if I could take anymore of her! :)

Oh yeah, I have my ultrasound tomorrow morning at 8. I am still having stomach pains so lets hope it has nothing to do with my gallbladder! I will let you know as soon as I know.....later gator.

Doctor's Appt.

Well, today I had a scheduled appointment with my wonderful pulmonolgist Dr.Faverio. I needed my port flushed an just a "regular" check-up.

A couple of days ago I started having belly pains on my right abdomen again and was a little worried it might be the gallbladder sludge again so I was glad I already had the appointment made.

My check up went well, he said I was a little tight and he heard tiny wheezes but thinks it might be the cold air so he said just to do an extra breathing tx for a few days to help that. Other than that im doing good.

I have to get some blood work next week that Gainesville forgot to have me do last week when I was there (they are SO unorganized!!) and to just be on the safe side I am having an ultrasound on my gallbladder/liver to see about my pains...but my doc is 99% sure my pains are because I am ovulating....I felt so silly!!

Other than that not much is going on.....anybody have anything interesting planned this weekend??

Waiting...

I have been waiting for an hour for medication for my headache.....
I have called the nurses station 3 times......
I am still waiting....

I am in the hospital

I just wasn't feeling ANY better and I want to be able to be with my family on Thanksgiving so I admitted myself tonight so that HOPEFULLY I can go to my moms house on Thursday and feel a little better than I have this week!

I have not slept in 5 nights due to my horrible headaches so I am just looking forward to some sleep!! Plus my appetite this week has been pretty much non-existent so I didn't want my weight drastically affected by not feeling good as well.

The only bad thing is that my doc wasn't on call today so I am being admitted by a doctor who doesn't really know my routine but that's ok I will see Dr. Faverio tomorrow! I will keep you updated on how I feel.

Got a call back...

My doctor's office called me back. He is starting me on 14 days of Cipro along with Colistin via nebulizer (I am on this every other month anyway but this is supposed to be my off month) I am also supposed to increase my albuterol treatments to 4 times a day. Hopefully the combo of all these meds will help me feel better and maybe I can get some sleep tonight!!

Headaches

The last 3 days I have woke up with the worst headaches I have ever had. At first I thought it was my pillow causing me all the problems because when I woke up the pain was at the back of my head where my spine meets but then once I would get up it would move to my whole head. When I take 600mg Ibuprofen I am fine but once it wares of its back again AND now its starting to effect my sleep...the last 2 nights I was up almost all night because of my head! I am going to call Dr. Faverio's office soon to let him know and see what he thinks. I will let you know the outcome.