Hi! My name is Jen, I am a 30 year old who has Cystic Fibrosis. I originally started this blog to keep track of my time on the double lung transplant list. Well after 2 LONG years and a lot of bumps in the road I finally received my transplant on December 2nd, 2010. Now I write about life post-tx and all that goes along with it! :)
So I am on my second day of prednisone and already I feel completely different than I did yesterday when I had to call my doctor. I am on 60mg once a day for 7 days so I think that this will really do the trick!
We went to our nieces birthday party at one. I figured we would be there for just a little bit and then we would come home but we left at five and were like some of the last people to leave. I was surprised I felt good that whole time and with no oxygen (not that I would have brought it to the party anyway...but its in the car if I need it!!!) Of course I came right home hooked up my abx did my treatment/vest then I was ready for a nap!!
Danny came home and was helping Curt and Karen (his friends who moved here from Minnesota) unpack stuff from there moving van and then they went grocery shopping for a few things. So I had a lot of time to relax!
The plan was to be done with abx on Wednesday but now I am not sure if that is going to be the case we will have to see what the doc says. I kind of hope im done because we were supposed to go on the boat for the 4th of July but I will be fine if he wants another week.
Well, I hope everyone had a great weekend and a good (short) week to come! Good Night.
So last night when I did my therapy I felt a little congested. Today it didn't get any better, I did my therapy longer and everything and nothing helped. All day I just felt like crud which sucked because we were supposed to go out for our friends birthday party and I was really looking forward to it!
As time kept getting closer to when I was supposed to start getting ready (we were going to the club at 9:30 so I literally had all day to try and feel better) I just knew that if I went out I would have been miserable because I just didn't feel good (my upper airways were tight....and they always are where I feel it when I am sick)
So I did what didn't want to do and I called my doctors office so they could page him so he would call me back so I could tell him how I was doing and maybe by some miracle he could tell me what to do so I could feel better and go out. So I called and this stupid lady answers and really ticked me off....by the way my voice has been weird all day like I was losing it (but my throat didn't hurt) so here is how the conversation goes:
Stupid Lady: "hello how can I help you??"
Me: "Hi, I was wondering if you could page Dr. Faverio for me?"
Stupid Lady: "Is this an emergency?"
Me: "well not really, I am one of his patient and I am on home IV meds and I needed to talk to him about something."
Stupid Lady: "well we aren't supposed to page him unless its an emergency sorry."
Me: "um, ok."
Can you believe that?? I was shocked and so upset. So I did the next best thing...I am friends with a lot of nurses that are on the floor that I go to when in the hospital so I called my friend Jackie...luckily she was working and she paged him for me and he called me right back.
He asked me what was wrong and what happened with the answering service. So the good news is he corrected the answering service so nothing will happen like that again...the bad news is I am now on prednisone for 7 days and I didn't get the prescription in time to start to feel better and go to the bday party! Oh well...she will understand! Plus, Danny's friends got here tonight so we were visiting with them.
I am already starting to feel better so I am glad I called him. Tomorrow is our nieces birthday party so I will let you know how I do going over there! Good Night!
So today is day 1 of home abx and let me just tell you that when my alarm went off this morning at 6 I was SO tired! I hooked myself up then quickly set my alarm to go off in 30 minutes so I could wake up and hook up my 2nd med. Once that was done I went back to sleep until my mother-in-law called and woke me up and then my mother called after that....I gave up trying to sleep and got up and did my therapy, which was good because while I am on abx my doctor wants me to do breathing treatments and my therapy vest 3-4 times a day. Today I got in four so I was happy.
After dinner Danny and I went to Target to get a gift bag and a few more things for Delaney's (our niece) birthday party Sunday. Walking around Target was a little hard on me. I am not 100% up to par yet. We are supposed to go to Universal Studios/Islands of Adventure in a couple weeks so I hope I can feel better for that.
Today my husbands best friend (the wedding he was in last week) and his new wife just started there way down to Florida tonight. They are going to be living with us for a few months until they can find a place of there own to buy. I am a little uneasy about the whole thing. Not that I don't like them..because I do its just im worried about being comfortable in my own home if I don't feel good and need my oxygen (there are VERY FEW people I will wear it in front of.) I might not need it that much now because I am feeling better but what happens in a month or two when I might not feel good again? Not to mention we have stairs in our house and sometimes when I don't feel good going up and down makes me feel winded. I know they know all about me because Danny has talked to his friend about stuff and they are good people and would never intentionally make me feel uncomfortable, its just something I am going to have to get used to.
Its just hard because I am so used to being able to keep up with everyone and do whatever I want and nobody knew anything unless I chose to tell them...my CF was just always there and it wasn't that big of a deal, it never really interfered with day to day things and now it seems to all the time. Anyway...I know I will be ok when they get here im just worried now. I will let you know how it goes.
p.s I know that last paragraph sounded like I am feeling sorry for myself and im not really I just worry what people think and I know I shouldn't. If there really my friends it shouldn't matter if I am wearing O2 but the fact is it does bother me. Hopefully I will have my transplant soon and wearing O2 won't become a everyday thing for me!
I got home around 4:30 and man was I tired! When you sit in a hospital bed for 2 weeks its a bit much doing all that walking. I got all my home meds delivered today also, I have 2 abx due every 8 hours for one more week so that should be fun. I have a friends birthday party Saturday night and our nieces (she's our god-daughter too) first birthday Sunday so I have to work my schedule around that...should be interesting.
Danny got home around 6:00, it was so nice to see him even if he was stinky!! (He's in construction!!)
Before I went into the hospital I had a Partylite party at my house so when I got home today I had 3 HUGE boxes full of stuff to unload so that was like Christmas in June!! Now all I have to do is deliver everything to the people who bought stuff.
I must say that as I sit here and write my blog in bed...the sound of my husband snoring is like music to my ears!! :)
Danny got home last night!!! YEAH!!! Also, the best doctor in the world Dr. Faverio came back from vacation yesterday so I was glad about that! I hate seeing other doctors.
I have been off of O2 for most of yesterday and today so all systems are a go to go home tomorrow. I will be on home IV's for another week at home but I don't care as long as I am home!!
Dr. Faverio did start me on this inhaled steroid for a couple weeks and that seems to be working good I started it yesterday. He doesn't like to give me predisone because all it would do is make my blood sugars all crazy, so he is trying the inhaled steroid to see how that works.
Danny is coming to visit me tonight when he gets home from work and he is bringing me the video camera so I can see the wedding he was at. I can't wait!
So today was a pretty good day. My mom and little sister came to visit and we watched national Treasure 2. Very good movie by the way...I love Nicholas Cage!!
I am back down to one liter of oxygen so hopefully by Monday when Dr. Faverio is back I won't be on it at all during the day. I was also moved a few rooms down today which kind of irritated me. I have alot of crap with me plus I was all used to the other room. Oh well.
Danny starts home tomorrow, I think he says it takes like 30 hours to get home (he is driving home from Minnesota) so he should be here by Monday and I think I am getting out of here Wednesday. I can't wait to sleep in my own bed!!
Tomorrow I will let you know more....have a good night!
So its day 8 on abx and today when I woke up my chest felt real tight in my upper airways. It wasn't until after my morning treatment did my sats go back up. Just the other day I was down to 1 liter of oxygen and then this morning and most of today I was back up to 2.
My normal doctor is on vacation so I am having to deal with the "on call" doctor who doesn't really no me best so I hope I am not getting worse. I just don't know what I can do to open up my airways. My doc doesn't like to put me on prednisone because it will raise my blood sugar but maybe that's what I need. He comes back Monday so we will se what he says.
Well Danny is boarding the airplane right now. I feel like such a baby but I am really upset that I am not going. Hopefully this week will go by fast and it won't be that bad, but who is gonna bring me my chocolate milkshakes everyday that I love?? Speaking of milkshakes....I got weighed yesterday and from friday I have gained 3.75 pounds! Not bad!!
So I am doing a little better. I haven't had a fever in a couple of days which is good and I am coughing less. I am still on 2 liters of oxygen all day so as soon as I can ween myself from that I should be able to go home.
I am SUPER bummed out, Danny is going to Minnesota tomorrow afternoon for our friends wedding (he was Danny's best man in our wedding.) I had bought a ticket for both of us but had to cancel my ticket when I was put on the transplant list because I can't be more than 4 hours away from Gainesville. Danny is in the wedding so he is still going and I am sad because he will be gone until the 22nd and I am stuck in the hospital all by myself :(
ok enough of feeling sorry for myself....lets be honest Minnesota isn't that great! (trust me I have been there before) now if he was going to NY I would be really upset...that's something to be upset about! :)
So today I haven't really done much. Last night I didn't sleep at all! Everytime I almost fell asleep I was woke up for something. Plus I had another fever last night so I was freezing aswell as being awake! I am tired today but haven't taken a nap in the hopes tonight I can sleep well.
I have had low grade temps all day nothing over 100 but I still feel crappy. I am hoping I feel better over the weekend and I can actually get up and get some work done!
Since the last time I was in here they have changed the tv to satellite and there are like no good channels....and when I say no good channels I mean the food network!! :) Oh well...
I called Shands today to let them know I was in the hospital (they tell you to do that.) At first they said that since I have been having temps if I were to get the call I could possibly be bipassed for a transplant, since I might have some sort of infection. But Judy, the transplant coordinator, called me back a little later and said that she talked to the doctor and he said I will still be able to go if and when I get the call. So thats good news.
So Monday night was our 1 year anniversary. Danny took me to a resteraunt in Cape Coral called Rum Runners. Its a really nice place right on Cape Harbour.
We ordered a bottle of Riesling, Danny doesn't really like wine so he had like 2 glasses and I drank the rest of the bottle (I wanted to take the bottle home and they wouldn't let us take it unless it was empty.)
I got seared tuna for an appetizer (my favorite...which by the way I don't think I am allowed to have post-transplant which bumbs me out) and Danny had a caesar salad.
For dinner I had really good pork tenderloin wrapped in prosciutto with mashed potatoes and string beans the whole thing was VERY good. Danny had a grouper sandwich with fries (boring.) Then our waitress asked us if we wanted a desseret since it was our anniversary on them (I was full but Danny said yes) and when it came out it was all decorated and it said Happy Anniversary! It was very nice and a great end to a wonderful dinner!
The last few days I have been feeling kind of rundown. I would do extra breathing treatments and my vest and I was on oxygen more and with all that I STILL felt tired so I knew something wasn't right.
I called my doctor Tuesday night to tell him I wasn't feeling right and he told me that the next day he would try to get me a bed at the hospital. So Wednesday afternoon I got a call and headed up to the hospital.
Now normally when I am admitted to the hospital WITHOUT fail I get a fever. I think that once I get some antibiotics and start moving secreations around its just something that happens. So of course today I start feeling chilly and even being under 2 blankets didn't help (anybody who knows me knows I am ALWAYS hot so this is very uncommon) so I get my temp taken and of course just like I predicted it was 102.6. I took some tylenol and it went down but by 5:30 it was back up to 102.2 so I got some motrin.
Now of course because I have had fevers all day I felt crappy and haven't really had an appetite so hopefully tomorrow will be better because I really can't afford to not be eating. My goal is to be home by Monday because my doctor goes on vacation for a week that day and I HATE the doctor that fills in for him so I will keep you all posted!
So Wednesday me, my mom, Danny, and my little sister all left at 6:30 in the morning to go to my doctors appointment in Gainesville. We got there at 10:30 (1/2 an hour early) and they took me back right away to get blood drawn. Then they told us we had to go to the first floor to get a chest x-ray (even though it wasn't on my sheet they sent me in the mail.) So we went down there and of course they don't know anything about it. So we wait 15 minutes and then the lady at the desk tells us that no we don't need an x-ray and to go back up stairs to the 3rd floor. This annoys me because hello I am there for a lung transplant and they have me walking all over the building for no reason!!
Anyway...back on topic. We went up stairs and waited in the waiting room for awhile. Once we got called back, I got weighed (105.8), got my temperature taken, my blood pressure, and my oxygen Sats. Then once all that was done I was taken to do my PFT's my FEV1 was about 15% which is what it was back in December so at least its not going down. After that was done I took a little rest and then did my six minute walk. Once I was done with all my test we went in the exam room to wait for the doctor.
Now normally we are at this appointment for HOURS, but Wednesday was actually the first time that we weren't there ALL day and we were back on the road and headed home by 1:00. The doctor says that I am doing great and I don't have to go back to see them for 3 months (unless of course I get the call.)
I am going to Gainesville with my mom for a transplant checkup. We might be leaving tonight so we don't have a long drive in the morning but that all depends on whether or not Danny is going. While I am there I am getting blood work done, Pulmonary Function Tests (PFT's), I have to do a six minute walk and then I see the doctors. I will let you all know how it goes/what they say when we get back!