Update on the Blood...

[Scarlett81]

Hi.

Today I'm not coughing up blood. I had a teeny streak but that's it. But last night I started to get this pain under my jaw/neck. And it woke me up at night too. So today I have this huge swollen gland under my jaw. It's killing me. Have any of you ever got that? And what does that mean?

Monday I will do PFts and be seen by the doc. If they're low, if there's a bad xray if I sound bad-into the hospital. Which will send me into a bad depression. I feel like I've worked harder than ever in my life in the past 2 months. Why am I getting this now?
I don't know how some of you are, but even though I've had who knows how many ivs in my life, each time I need ivs in still emotional for me. Especially if I've been doing extra to take care of myself. It seems like such a failure.

I'm bummed.

 

[bgchastain]

I'm so sorry you are feeling this way today!! I know exactley what your going through right now. I have been working my butt off for the past 6 months and my PFT"s have done nothing but go down!! It's so frusterating! The dr's have put me on a lot of diiferent meds and they just started me on the hypertonic saline, which seems to be working great. But this morning I wake up and all of the skin around my rib cage is sore to the touch( I know this sounds crazy), apparntly I'm having a allergic reaction to the prednisone they put me on. It days like this you just want to pull your hair out. I will say after the first "bad" report it took me like a week to get back up and continue working hard, but I keep thinking maybe since I'm working on getting stuff up it's just going to get worse before it gets better. Like maybe since all of the bugs are being moved around now it's just taking a little bit to get it all clear. That's my theory, hope it makes since to you<img src="i/expressions/face-icon-small-smile.gif" border="0">

I'll keep you in my thoughts and prayers for Monday!

 

[Scarlett81]

I used to have Iv's about every year and a half-to two years.
Then every year.
Now I'm about every six months. Just that makes me bummed.
But-to be honest, I haven't always taken good care of myself. It's only in the past 6 months to a year that I've been really stepping up to the plate. I really increased my routine about 3 months ago. And my first pft after my 'new' regimen was the highest its been since I was like 16.

Have any of you ever bounced back after bad pfts? Like I mean had really low ones and then got them up real high by some method? Is that possible?

Guys I'm getting so down about my illness. This is so weird b/c I never did my whole life. But I'm scared of you know-I can't even say it. Am I just facing it all now?

 

[Allie]

Christian, I don't really have any answers about bouncing back, it never happened for us, but cepacia was involved. I'm sorry you';re getting bummed about your illness, and if I can ever help, contact me *hug*

 

[CowTown]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Scarlett81</b></i>

Monday I will do PFts and be seen by the doc. If they're low, if there's a bad xray if I sound bad-into the hospital. Which will send me into a bad depression. I feel like I've worked harder than ever in my life in the past 2 months. Why am I getting this now?

I don't know how some of you are, but even though I've had who knows how many ivs in my life, each time I need ivs in still emotional for me. Especially if I've been doing extra to take care of myself. It seems like such a failure.

I'm bummed.</end quote></div>




Hi Christian,

Everytime I go into the hospital for IVs it starts the roller coaster of emotions for me too. It's a cycle, then I get better...then I get sick....the time can differ inbetween for me but I too always get so bummed about it. I'm seeing my doc on monday too, and it's a nerv-racking thing. Never know what they're going say. I always bring my laptop (b/c I live far away) just in case they throw me in the hole.

I am at my lowest pfts now, and just working on bringing them back up. I don't have any tricks to share. Keep doing the best you can do!

I wish you luck for Monday!!!

 

[JazzysMom]

I have been at tx levels twice. Once in 2000 & once last year & have always gotten back up pretty high. It has taken a good year or more to do so. I havent been back to my baseline since my problems last year, but I am working hard at it. Dont be discouraged. As I tell my daughter sometimes no matter how hard we try, CF takes the lead in a race. It sucks, but it happens! You would go into St. Vinny's? If so I just happen to know the address & phone number by heart.....maybe you will get a surprise on Monday! Good Luck!

 

[Scarlett81]

Oh-Melissa. You're too sweet. Yes I'll be there monday. But-as much as I'd love to see you-I would never risk giving you my cepacia! I couldn't do that to you. BUt the thought of meeting you got me so excited for a minute.

I hope I don't have to be admitted. She told me to bring an overnight bag just in case. <img src="i/expressions/brokenheart.gif" border="0">
But I'm working my fat hiney off to stay outta there. There's too much to do right now. I can't go in! Anyway-I don't feel like I have an infection, seriously. I guess you never know though. We'll see how the PFTs are in the office first, then x-rays,......then she will make the call. Either admitted, home iVs (which still suck), or a miracle and my Pfts are higher than they've ever been, and I go home. Ahhh, we all have fantasies. (Isn't it pathetic that mine are about PFTs????!!!!!)

What can I do? I'm getting so discouraged. I feel like no matter what I do it doesn't matter. No matter how hard I work.<img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[JazzysMom]

I realize that I couldnt actually visit you if you were admitted <img src="i/expressions/face-icon-small-sad.gif" border="0"> but my heart is in it <img src="i/expressions/heart.gif" border="0">. I wish you the best on Monday & dont think I wont be tracking you down if I dont see a post by lets say 4pm on Monday!

 

[Scarlett81]

Here's the cherry on top Melissa-

My office visit is 2 pm. At 4 pm I go for a minor sinus procedure to another doctor at St. V's. Just a cat scan and tissue sample. YEah! Have you been to the Sinus guy that Walker sends her patients to yet? I went there last week for a visit. My sinuses are killing me. So he ordered the cat scan and stuff. I have a deviated septum. So I don't know if I'll have to have major surgery on it or not. Monday will tell.
Monday's like the day of Judgement for me.

 

[nickandlivsmom]

Hey Christian
Hope everything goes well for you on Monday! I know how you feel....I don't want to be admitted either!!! I will say lots of prayers for you! <img src="i/expressions/face-icon-small-smile.gif" border="0">
I had sinus sx a few years ago by Dr. Loft. I think he is an excellent Dr. I also had a deviated septum. My sinuses were filled w/ mucus. The Sx really helped. Although at my last visit Dr. Berdella said it was time for me to see him again. I haven't gotten around to making my appt. She wanted me to go by the end of MArch. I guess I better call for an appt. I just hate the thought of being admitted!!!!
Good Luck on Monday! I'll be thinking of you!-Carrie

 

[Scarlett81]

Carrie-

Call me ignorant-but what is a sinus sx? I'm new to the sinus thing. What do they have to do with the deviated septum? b/c I was in and out of Dr. Loft's office. I like him, and he definately knows what he's doing. But-I think there's wasn't time for him to explain how they treat the deviated septum.
He put me on Cipro. He said I had a raging sinus infection. And all he said about the deviated septum was that it was a bad one. I don't know much about them. So the tissue sample and cat scan is monday. And I guess we go from there.
I really don't know what to expect. Do you mind saying what happened with you?

I didn't know anyone other than Melissa who was at St. Vinny's! Nice to meet you!

 

[anonymous]

Nice to meet you too! <img src="i/expressions/face-icon-small-smile.gif" border="0">
Sinus sx = Sinus surgery!<img src="i/expressions/face-icon-small-smile.gif" border="0"> Just my abbreviation for it! Sorry! I worked in a dentist office for a long time and always abbreviated surgery that way!
I always have bad sinus infections too. I am on Cipro right now for one. I think I had sx in 2002 and have been so much better until now. I guess I am lucky because i hear of ppl having sx and then having to have another one six months later!<img src="i/expressions/face-icon-small-smile.gif" border="0">
With the deviated septum I believe he had to shave part of the bone??? But I am not exactly sure. My sx was a little complicated. He had to put a splint in my sinuses and I was bleeding a lot. But everything was great after sx so I was very very happy with him!!!! He also had to remove some polyps too. I think he is a wonderful Dr. and I am so happy that he has office hours at St. Vincents now. I used to have to go all the way up to the 60's. There was always a long wait in his office but well worth it. If you have any questions-DO NOT HESITATE TO ASK!! you can pm me if you like!
Are you going to diagnostic radiology on 17th St on Mon? They are pretty good there too!
I wish you luck!!!! Don't worry about Dr.Loft!!!!You are in good hands!!!!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

^^^^Sorry! - That is me- Carrie- nickandlivsmom! Forgot to log in!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Scarlett81]

yeah- I'm going to the Radiology on 17th.
So you're sinuses were bleeding alot? I don't get 'bloody noses', but I get alot of blood in my snot. I blow out these huge bloody clots. And man oh man-my nose runs constantly! I feel so embarassed by it when I'm talking to people. I feel so self conscience-like I constantly have to worry about it.
My concern is at night. I feel it dripping into my lungs. And I'm always clearing my throat. That will obviously give me more lung infections, right?
So you said that you felt so much better after the surgery. Did your symptoms stop?
Ok- here's another question, sorry!-But did it alter the shape of your nose? B/c I'm actually not so worried about that. I could use my nose shape getting altered! But just wondering what your experience was with that?

 

[anonymous]

hey Christian, me again (not logged in!)
During the actual surgery I was bleeding a lot. They had to give me a shot of Vit.K to help stop the bleeding. I normally don't have trouble w/ bleeding. You know, every once in a while some bloody snots!<img src="i/expressions/face-icon-small-smile.gif" border="0">
After surgery I could actually breath through my nose. It's great! And Dr. Loft made a "bigger" passage in my sinus cavity so every once in a while I can clear them good! I could never do that before. I'm telling you, i t really helped me.I was always bad w/ post nasal drip and could feel it driping into my lungs. Now I hardly have that problem. Most of my sinus "symptoms"disappeared. Just recently, almost 4 years later I am starting to have symptoms again. I really need to take care of it. Must make an appt. soon!

About changing the appearence of your nose, I think Dr. Loft asked me if I wanted to.???? But I am not completly sure. I didn't because my nose is OK. (probably the only thing on my body that is<img src="i/expressions/face-icon-small-smile.gif" border="0">!) But you can discuss that with him!I'm sure he would do anything he can!

Good Luck! Let me know how it goes! I'm praying for you!

 

[Scarlett81]

Thanks so much for sharing Carrie!!!

Its nice to see someone who has had success with Dr Loft. Since I don't know him at all. Thanks for you experience.
I'll be in touch.<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[JazzysMom]

Christian....I consulted with Dr. Loft during my last checkup to make sure some of my lung issues werent coming from the sinuses. I was extremely nervous, but I loved him & he really put me at ease. Fortunately for me he said for a CFer I had pretty good sinuses (so far). Maybe if you get this taken care of things with your lungs will ease a bit. I wish you the best & if Carrie has dealt with him more on a level that you will than I would trust her thoughts/opinions. I was very glad he started having hours at St. Vinnys. The thought of having to run all over the city makes my blood pressure raise & that is about the only thing that does it! Where are the procedures done tho? At St. Vinny's?

 

[littlemisssilly]

Hi Christian,<br>
<br>
So sorry to hear that you're not well. I too will be having a 'tune
up' real soon because I'm listed for sinus surgery also, so my
doctor wanted me to have IVs a week prior to surgery (I haven't had
IVs for six years so I know I'm lucky but it's still crap
regardless and makes me feel flat). I also obsess over what my PFTs
are doing, they really make or break my day.<br>
<br>
As for the surgery, I'm hoping all goes well but really, I'm also
freaking out about it underneath it all. So glad to hear that
Carrie had such a good result with her sinuses, it makes me feel
better. My sinuses are just awful: daily pain, constant
antibiotics, post nasal drip 24/7 and I end up having to make these
snorting sounds to help clear the mucus from my nose, so I spend my
days literally sounding like some pig just to clear all the
mucus (ha, maybe that's why I'm single!)<br>
<br>
Anyway, I'll be thinking of you, I hope you feel better soon <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Scarlett81]

hey Melissa-

The procedure's at Diagnostic Radiology on 17th. Close to St. V's. I think it might be affiliated with V's somehow. And then if I have to have sinus surgery I don't know where that'll be, but I'll cross that bridge if I come to it.
Thanks for the good wishes LB. Hope yours goes well too!
I'm really hoping that clearing up the sinus issues will improve my lungs too. High hopes!
I just hope that the surgery isn't dangerous or too complicated. Thats' my biggest fear.

 

[littlemisssilly]

Hi there,<br>
<br>
I'm also hoping that the surgery will make my lungs less likely to
play up, my sinuses have been bad for about five years but
progressively worse over the last two to the point that they rule
my daily life. My CT scans were terrible from way back but the
surgeons here are somewhat conservative that's why it's taken me so
long to have the surgery. I'm getting the FESS (functional
endoscopic sinus surgery) procedure here, I'm told I'll only be
under anaesthetic for about half an hour or so which gives me
some relief.