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 that...next 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!!!

Check-up

Well, I got home last night around 6:00 from my tx check-up in Gainesville. It went well...like it usually does and I don't have to go back again for another 3 months.

My weight is up another pound to a total of 116 pounds and my PFTs are the same as they were last time I was in Gainesville about 6 months ago (they were actually an improvement to the PFTs I did a couple weeks ago at my CF drs office that I was a little worried about so thats good.)

So all in all I am doing ok...holding my own. I think I am definitley going to try the liquid oxygen thing. Everyone I have talked to seemed to like it better than regular O2 tanks so we will see.

I am most likely going to admit myself in the hospital within the next couple of weeks. It will be around my usual time for needing a tune-up anyway and I want to be proactive and get in an out so that I am not admitted for my 28th birthday on February 3rd!! :)

???

Does anyone have any experience with liquid oxygen?

My O2 provider keeps suggesting that I might want to use liquid O2 instead of ordering tanks all the time.

My doctor says there really isn't a difference I was just wondering what blog land thinks and if you had any comments....Thanks!! :)

Regulator update...

So my case manager tells me that they found "one more" pulse regulator but that it was in there Orlando office and was going to take a few days to get here. Fine whatever...

In the mean time my awesome mom made a few calls and her friend Heidi got me a loaner regulator until my company can get there acts together.

The problem now though is that the loaner one will NOT stop pulsing!! All it does is pulse even if I am not breathing in...and I thought the whole point of the pulse was to conserve the O2 when not inhaling!!?? Its very annoying and almost unbearable to wear.

Hopefully my permanent replacement will come soon.

Irritated...

So everyone knows I am on O2 all the time. When I am at home I have a concentrator that I use and then for going up and down the stairs or to leave my house I have little "D" tanks with a pulse regulator on them to make them last longer.

Well....last night I went down stairs at 5:00pm like usual to start dinner for when Danny got home from work and I set my tank on the kitchen counter like I always do. I was just getting things out of the fridge when the phone rang so I went to reach for it and it was just out of my reach so I stretched my arm a little to get it and when I did my tank went crashing to the floor and now my regulator is broken!! :(

I called the oxygen company right away because I was so upset and the guy who is my case manager called me back and basically said I had the ONLY pulse regulator in the whole company and he doesn't know if he can get another one. WTH....how can I have the only one?? and even if I did have the only one isn't it his job to order me a new one if the one I have breaks? I mean he is my oxygen supply company!!

For now I have a regular regulator on my tank so at least I can still go down stairs to eat and take Brodie out but it wastes so much oxygen using that kind I hate it.

The guy is supposed to be calling me back today....hopefully with good news.

Still not feeling great

I still feel very BLAH. My O2 sats are fine but I am definitley way more congested than usual and im coughing up a lot of crap! So I think it is time...

I called my doctors office today and told them how I was feeling so I will have a bed ready sometime tomorrow, that way I can have tonight to get all my things together.

I am just glad to be getting it over with now cause I will be out in time for Thanksgiving and hopefully be fine through Christmas too! Oh yeah and don't forget New Moon on Nov. 20!! ;)

Weekend Update!

So Saturday was a great day. I woke up, Danny made me and my sister breakfast, I did all my morning meds and by 11:30 me and my sister where out of the house and on our way to the first store.

We were gone ALL day and didn't get home till 5:00. We had so much fun and the best part was I had the energy to walk the entire time without sitting down and needing a break. I did have my O2 with me but usually even with oxygen I still need to take a break but this time I was fine! It was so nice to be feeling good and be out an about. It sure as heck beats being stuck at home or in the hospital!

Once we got home we planted my new flowers in there pots (that was funny we had potting soil everywhere!!) Then we watched TV for awhile waiting for Danny to get home and then we went back out to get dinner and go to Target! I was so tired by the end of the night that as soon as my head hit the pillow I was out like a light! :)

Here are some photos of my pretty flowers....lets just hope I can keep them alive!!

Sooner or later my house will come together. We have lived here a little over a year and its just now starting to feel homey to me. A little at a time....

No more Bipap

I saw my doctor this morning. We have come to the agreement that the bipap machine is NOT for me. I felt really bad, like I was letting him down but he said it was ok and that some treatments weren't for everybody.

We are going to work on getting my O2 back down and the plan is to have me go home sometime this week. I am so ready to get out of here! :)

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....

More on bipap

Just to clarify a couple of things about the bipap. My doctor is suggesting I use the bipap machine ONLY to sleep with like people who have sleep apnea or snoring problems do. It in no way is because I can't breath on my own or because its being used instead of venting because I am absolutely NOT there! (Thank God)

To answer Sara's question: He says that sleeping with the bipap at night will be beneficial to me because I won't be working as hard to breath while asleep, which in turn will give me a better nights rest and I will wake up more rested and with more energy. I would also be burning less calories to breath. Oh yeah, and I asked him about the drying out part and not being able to cough things up and he said that it "could happen" but that its different with everyone.

There was a couple other things he said but honestly I can't remember because I am just trying to get past the mask part! I am probably not going to try it until either the weekend or next week once I am feeling better so I will keep you posted.

On a lighter note...my weight is up and the liters of O2 I am on is down so I am headed in the right direction!! :)

I need some thoughts on a few things...

Have any of you ever used a bi-pap machine to sleep at night? If so, what did you think?

My doctor thinks that I will benefit from using one. The only BIG problem is I can't stand anything that covers my face. I feel claustrophobic and like I am suffocating (even if I know im not.) I have never liked this feeling, so much so that I can't even have covers over my face. I don't know how to get over it.

My sats are fine when I am wearing my O2 at night but my dr lists off like 6 other things that would improve by using the bi-pap. My uncle has one because he has sleep apnea and he hates it and doesn't wear it.

They already brought in just the mask part so they could find one that might fit me (and so I could try it myself to see if I can get used to it) and as soon as they placed it on my face I start tearing up and getting upset.

I don't know I really need to hear some suggestions. Thanks.

Transplant Check-up!

So I completely forgot to mention that I had a Shands (my transplant center) check up coming up. It was yesterday and I have to say it went pretty well.

They are THRILLED that I have started my pulmonary rehab and say thats the best thing I could do for myself for after transplant~~which I already knew! :)

One thing that I was really worried about was doing my PFT's. I thought for sure they would have gone down. It's been awhile since I have had to do one and I have been in the hospital A LOT lately so I was a little concerned about what the results would say. To my surprise my FEV1 was actually the same as it was a year ago which I am SO thankful for.

They did tell me that when I am moving around I should be wearing my oxygen more...which I kind of knew already it just sucks them actually saying it. When I am sitting my oxygen stays ok but as soon as I move it drops which isn't good. I am hoping with me being more active now with the exercising and stuff that will improve a little but who knows.

Also, I know a few CFers who read my blog are/were on oxygen all the time and I was wondering what you did/do for when you went out. Did you use big "E" tanks or did you have something smaller to lug around??

At home I have a big concentrator which I use when I sleep and then I have a little concentrator that I bought a year or so ago to take with me to NY (its like 10pounds and it is portable and acceptable on airplanes and I needed to be able to have something with me to sleep at night) that I use when I am around the house but the battery life on that thing isn't that great so its plugged in a lot of the time.

Anyway...any feed back on this is appreciated. IF I have to start wearing oxygen when I am out the least noticeable kind is the better! Thanks in advance~Jen