Hello, I am 33 recently diagnosed with CF...how many of you have been diagnosed as adults? I am just curious. My sweat test was equivocal at 48 with a repeat on the way, I grow cepacia in my lungs (but I am vent dependent, still rare for a ventilated person to grow that out I hear), have pancreatic insufficiency and take enzymes to hellp with digestion or I am miserable. I am waiting on extensive genetic analysis...my doc is convinced I have rare mutations. I am on a vent because of neuromuscular issues, my muscles became too weak to breathe on my own..docs still don't know why with that one. Either it's a wild form of muscular dystrophy or an atypical presentation of ALS...either way, it bites. Iam always on IV's, actually typing from a hospitial bed as I write....down to 3 antibiotics from 5, the cepacia was pretty bad. I have been in since Aug 29th and will go home the 22nd god willing....I am sure alot of you folks have had hospitalizations regarding your disease...either way it sucks doesn't it??? I have a medi port because I have had to have so many IV treatments, no regrets there...I take that over a PICC any day <img src="i/expressions/face-icon-small-smile.gif" border="0">. Anyhow, enough about my ailments and such, I have two kiddies 11 and 13 and love my computer LOL!!! I was an ICU nurse prior to my illness...so living on a vent certainly has a surreal feeling to it. Thanks for letting me join, hugs, Cepaciagal
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Hi there, I am new here....
- Thread starter JustDucky
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ccflewallen
New member
Wow! Just diagnosed at 33, two kids, and now cepacia. What a dramatic turnaround. Well, you are certainly a rare case of CF I think. How long have you had digestion issues? Have your children been tested? You will probably get tons of questions so I wont flood you right away.
My name is Chris Flewallen 26 w/CF. I was diagnosed at birth. I am glad you found your way to a place where you can talk to others w/ cf. Good luck with everything and I hope you get well.
My name is Chris Flewallen 26 w/CF. I was diagnosed at birth. I am glad you found your way to a place where you can talk to others w/ cf. Good luck with everything and I hope you get well.
HI cfflewallan!! It's great to hear from you...I have had increasing digestive problems over a year now, I basically avoided all fats as they caused severe pain and diarhea, docs finally diagnosed pancreatic insufficiency and put me on the enzymes..boy oh boy what a difference!! I was also losinga lot of weight...Iam not the typical CF'er, I am 5'7 and 185lbs still dropping though...glad I had something to lose LOL! I can finally eat normal foods without fear LOL!!! Yeah, the docs believe it is a very rare mutation of CF..I was diagnosed with asthma at 22, but had problems earlier as a kid...could never do track, I couldn't keep up with the other kids with running so I the docs think I had issues alot earlier than now. Of course, now I live on a ventilator which really complicates things, the neuro stuff did that to me..but what got the docs was my thick secretions (could not tolerate the vents without humidity, had problems prior to the vent as well with the secretions) and of course that lovely cepacia. I have grown staph, Serratia in the past prior to the vent. So...hmmmm. I am my docs worst nightmare LOL!!
I think that once they figure out which mutations I have, they wil test the kiddies too....my son has asthma, was diagnosed at 3 years old but is well controlled. My daughter relatively healthy...I would definitely check htem out.
As far as questions, ask away! It was great to meet you!
Hugs, Cepaciagal
I think that once they figure out which mutations I have, they wil test the kiddies too....my son has asthma, was diagnosed at 3 years old but is well controlled. My daughter relatively healthy...I would definitely check htem out.
As far as questions, ask away! It was great to meet you!
Hugs, Cepaciagal
ccflewallen
New member
What I like about you already is your optimism. You seem to be really upbeat despite your condition. I say keep it up, it will be to your benefit. I am wondering why you weren't tested during the time you were diagnosed with asthma? Also, did you cough up much "stuff" when you were younger? Was it green? Do you remember if your skin was salty? Like when you would sweat, did you have salt crystals on your forehead or anywhere, or did your sweat burn your eyes? I'll give you time to answer those before I shoot some more at ya LOL
Chris
Chris
6
65rosessamurai
Guest
Hi Cepaciagal, Hi ccflewallen,
My Name is Fred.
It's sad to hear your situation, Cepaciagal, but please hang in there!
Chris seemes to be lucky to be diagnosed at birth, I was 8 and a half, and am now 40.
I just recently signed onto the forum today, and having a nice time finding others who I find I can share my experiences with, or ask them about theirs.
Yes, this is a good place to talk to others.
I have two computers (actually 3, if you include the company owned one I use at work), and I love them, too, but they are going on 4 and 5 years, and in need of a replacement, due to the inadequacy of RAM space upgrade, and Microprocessor speed. I hope to do that for Christmas!
I was recently at my doctor's, complaining about easy fatigue and frequent coughing. He did a CT scan of my lungs, and found some heavily blocked areas.
He's not a CF specialist, because they don't have any in Japan, so I'll be taking that information with me to the states to talk with someone.
What kinda sucks here is, my first wife assured me there was a physician who was knowledgeable, but that was all ****. The doctor I found now is not a specialist in CF, but I've seen he has a lot of knowledge of the internal organs, has heard of CF, and is cooperating with my wishes.
My Name is Fred.
It's sad to hear your situation, Cepaciagal, but please hang in there!
Chris seemes to be lucky to be diagnosed at birth, I was 8 and a half, and am now 40.
I just recently signed onto the forum today, and having a nice time finding others who I find I can share my experiences with, or ask them about theirs.
Yes, this is a good place to talk to others.
I have two computers (actually 3, if you include the company owned one I use at work), and I love them, too, but they are going on 4 and 5 years, and in need of a replacement, due to the inadequacy of RAM space upgrade, and Microprocessor speed. I hope to do that for Christmas!
I was recently at my doctor's, complaining about easy fatigue and frequent coughing. He did a CT scan of my lungs, and found some heavily blocked areas.
He's not a CF specialist, because they don't have any in Japan, so I'll be taking that information with me to the states to talk with someone.
What kinda sucks here is, my first wife assured me there was a physician who was knowledgeable, but that was all ****. The doctor I found now is not a specialist in CF, but I've seen he has a lot of knowledge of the internal organs, has heard of CF, and is cooperating with my wishes.
ccflewallen
New member
Yes I was fortunate to be diagnosed at birth. I had a blockage. There is a fancy name for that but I am not about to try to spell it lol. I was transported by helicopter from a army hospital in NC to Chapel Hill where they fixed the problem and diagnosed me shortly thereafter. I am reasonably healthy but have problems this time of year with what I call my "poison", RAGWEED. I think I am highly allergic to it. Other than that, I am good. I work two jobs; teach pre-school and youth pastor at church, attend school at Western Ky Uni. Also I am very tired right now. I hope to talk to you all tomorrow sometime. Nice to meet you 65rosessamurai
LOL Chris!!! I try to remain optimistic, it's the only thing I have to keep me going sometimes. I have a few choices...either accept what is happening to me and try to deal with it or sit in a corner and cry and lament over it. I chose learning to deal with it and doing the best I can with my life..I feel that every day given to us is a gift, how you use it is your choice. I try to do something positive everyday, like I said before, I run a few pulmonary groups, it makes me feel good to be able to help people. Must be the nurse in me LOL!!!! I have a sense of humor, that helps too...laughter can take away so much pain.
In regards to being tested as a kid, no one suspected I had CF, not even until now when I started to show more pulmonary issues as well as pancreatic issues. I always have had thick sputum, I don't remember it being green though unless I had an infection. I had a very hard time bringing junk up from my lungs...so getting cultures were hard for the docs to get. My skin is salty, not quite like a potato chip but it is salty. I used to sweat like you did, so much so that it went into my eyes and hurt. I don't remember salt crystals though...
When I was diagnosed at 22 with asthma, my doc said it was "atypical", it didn't present like normal asthma and I was hospitalized at least once a year with pneumonia....docs just blamed the asthma. Now I have a different doc who has looked over my records and basicially said "ah ha" and is starting the long gamult of genetic testing. My allergist agrees with her completely. My pulmo is on the fence though. He is not sure what to think...
Ask away if you got anymore questions!!!! Hugs, Cepaciagal
In regards to being tested as a kid, no one suspected I had CF, not even until now when I started to show more pulmonary issues as well as pancreatic issues. I always have had thick sputum, I don't remember it being green though unless I had an infection. I had a very hard time bringing junk up from my lungs...so getting cultures were hard for the docs to get. My skin is salty, not quite like a potato chip but it is salty. I used to sweat like you did, so much so that it went into my eyes and hurt. I don't remember salt crystals though...
When I was diagnosed at 22 with asthma, my doc said it was "atypical", it didn't present like normal asthma and I was hospitalized at least once a year with pneumonia....docs just blamed the asthma. Now I have a different doc who has looked over my records and basicially said "ah ha" and is starting the long gamult of genetic testing. My allergist agrees with her completely. My pulmo is on the fence though. He is not sure what to think...
Ask away if you got anymore questions!!!! Hugs, Cepaciagal
Wow Fred, you live in japan??? I hope you get the help you need...I see that you are 40 years old, that makes me feel good. What kind of things do you do during the day...meds, therapy etc....How did they think to diagnose you at 8 1/2 years old??? Just curious...It took so long for the docs to even consider CF with me, but I have never been typical, gotta keep them thinking huh???? I believe that this forum is great too...I just found it today and have read many of the posts and can identify with so many of them....As hanging in there, I do that day to day, sometimes by my toenails but I do LOL!!!!
Chris, it is good that you were diagnosed at birth, I agree....you must have gotten very aggressive treatment from the beginning. I admire everyone's courage here on this board...dealing with a chronic illness isn't a piece of cake, every day comes with its own challenges doesn't it? Like I said....I just go day to day, sometimes second to second LOL!!
Hugs to all of you, and again, it is great to meet other folks who can identify with me. Cepaciagal
Chris, it is good that you were diagnosed at birth, I agree....you must have gotten very aggressive treatment from the beginning. I admire everyone's courage here on this board...dealing with a chronic illness isn't a piece of cake, every day comes with its own challenges doesn't it? Like I said....I just go day to day, sometimes second to second LOL!!
Hugs to all of you, and again, it is great to meet other folks who can identify with me. Cepaciagal
ccflewallen
New member
See that is something that gets to me. When you were young and had a hard time getting sputum up and sweat was burning your eyes, lights and whistles should have been going off somewhere. Especially when you were 22. Oh that just burns me up, theres no excuse in my opinion. But anyway, back to the positive LOL! You are exactly right. Every day is a gift given to us and it is wonderful that you are using it to help others rather than sit in a corner and pout and complain. I have days when I would like to do that but we have to keep going and try not to let it get us down. If we do, it will kick us while we are down if you know what I mean. God bless you Cepaciagal and your family. You are a blessing to me already.
Chris
Chris
((((((Chris)))))) Thank you....you sound so positve yourself! I know...bells and whistles should have gone off, but they just kept chalking it up to the asthma because I didn't look like the typical CF'er...I was of normal weight and height, my pancreas was spared then. Apparently, I am not having a good time with that now...but, hey what's another med???? I also lived in a rural area...no real specialists there and my GP then didn't think of it then...
Thanks for being there, you have been a blessing to me as well! Hugs, Cepaciagal
Thanks for being there, you have been a blessing to me as well! Hugs, Cepaciagal
6
65rosessamurai
Guest
Cepaciagal,
You already seem to be on the road to recovery with your frame of mind to look in a positive way.
However, crying would release stress and tension, so I recommend to not hold it back, if you need to.
But, laughter IS the best medicine!
Did you also seem to catch colds, and have fevers frequently? The fact that you have children is an amazing blessing. You may not know that most CF patients are sterile.
By the way, with your salt test, did the result show a borderline CF, making the diagnosis difficult? I'm not familiar with how the test works exactly, upon my diagnosis, my siblings were tested at the same time, and I was the only one who showed positive.
How about work, what do you do?
I'm currently at work, but have a jerk for a boss, so I've been slacking all day.
I guess it can't be helped, I'm going to visit the states for a week, I'm leaving Friday, and he probably doesn't have anything for me to do between now and before I leave.
The odd thing is I've been in this forsaken job for 12 years, and this is how I spend my days!
With that, God Bless and We're all with you!
You already seem to be on the road to recovery with your frame of mind to look in a positive way.
However, crying would release stress and tension, so I recommend to not hold it back, if you need to.
But, laughter IS the best medicine!
Did you also seem to catch colds, and have fevers frequently? The fact that you have children is an amazing blessing. You may not know that most CF patients are sterile.
By the way, with your salt test, did the result show a borderline CF, making the diagnosis difficult? I'm not familiar with how the test works exactly, upon my diagnosis, my siblings were tested at the same time, and I was the only one who showed positive.
How about work, what do you do?
I'm currently at work, but have a jerk for a boss, so I've been slacking all day.
I guess it can't be helped, I'm going to visit the states for a week, I'm leaving Friday, and he probably doesn't have anything for me to do between now and before I leave.
The odd thing is I've been in this forsaken job for 12 years, and this is how I spend my days!
With that, God Bless and We're all with you!
well hello to all 3 of you....cepaciagal~ccflewallen~65rosessamurai <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
It sounds like we all have our share of "annoyances" in our lives....lol
cepaciagal....did you find out you had cepacia at the same time you found out about the cf? or did the cepacia come later? I have cepacia also, i got it about 9 years ago. I was diagnosed with cf at 3 years old and didnt have many problems till i got the cepacia. So i am wondering if the cepacia is what sort of brought them to your cf diagnosis.
enjoy the board, it can be very informative and funny at times. <img src="i/expressions/face-icon-small-smile.gif" border="0">
It sounds like we all have our share of "annoyances" in our lives....lol
cepaciagal....did you find out you had cepacia at the same time you found out about the cf? or did the cepacia come later? I have cepacia also, i got it about 9 years ago. I was diagnosed with cf at 3 years old and didnt have many problems till i got the cepacia. So i am wondering if the cepacia is what sort of brought them to your cf diagnosis.
enjoy the board, it can be very informative and funny at times. <img src="i/expressions/face-icon-small-smile.gif" border="0">
ccflewallen
New member
Hi Diane, glad to have you on board <img src="i/expressions/face-icon-small-smile.gif" border="0"> Yes these forums can get pretty silly at times and very good at the same time. I have only been on here for two days and it didn't take long to see that there are a very wide range of views expressed by different individuals. I think this particular thread has promise though. The two others on here so far (cepaciagal and 65rosessamurai) seem to be very good people to talk to about CF or anything else for that matter. I know you will agree when you meet them if you havent already. God Bless,
Chris
(ccflewallen)
Chris
(ccflewallen)
Hey Fred, yeah, it is good to cry once in awhile..I call it a sould cleanser....Lilving with this disease or any chronic one for that matter can do a number on the psyche, so yeah, it is definitely good to get it out once in awhile..but for the most part I just keep on plugging on and smiling and offering humor when I can..like when I am in the hospital, I always mess with the interns, they are so fun to fluster LOL!!!! I did get colds as a kid, but they really get bad as an adult, bronchitis and pneumonia were pretty frequent. As far as my sweat test, they will repeat it once I am t hrough with antibiotics and home and back to baseline...it does make it more difficult to diagnose when the tests are borderline, so the docs have to look at the whole picture and run more extensisve tests to see what's what. I don't work now, I had to stop 3 years ago, was an ICU nurse...how ironic is that? I used to take care of so many folks with vents ,now I live on one...at least I am very familiar with one LOL! I am sorry you have a jerk of a boss to deal with....that doesn't help things, probably increases stress by far. You said you were coming to the states? That change would be good for you. Thank you for being there for me, you guys are great!
Hi Diane, thanks for the welcome..yes, that's what made the docs wonder about the CF diagnosis, since cepacia is normally a CF bug. I can't believe you have had it for 9 years, isn't it a wonderful bug??? I can't believe how resisistant it is...I have only had it since April but been on antibiotics 4 times since then for this infection. Do you know which type of cepacia you have? My doc is typing what cepacia I have, apparently there are 9 different types out there with their own virulences.....Amazing. What sort of problems have you had with this bug?? I am sure more infections, as it seems to be the case with me...but I have heard of folks with this bug just colonizing it and having no problems with it. I guess we were given the short straw huh???? It would be interesting to know how this has affected you. I hope all is well with you and hugs to you...
Chris, thank you again for your kind words, I think I will fit right in here...all of you have given me some good insight already. Hugs to you and your family as well
((((((Everyone)))) and thanks....Cepaciagal
Hi Diane, thanks for the welcome..yes, that's what made the docs wonder about the CF diagnosis, since cepacia is normally a CF bug. I can't believe you have had it for 9 years, isn't it a wonderful bug??? I can't believe how resisistant it is...I have only had it since April but been on antibiotics 4 times since then for this infection. Do you know which type of cepacia you have? My doc is typing what cepacia I have, apparently there are 9 different types out there with their own virulences.....Amazing. What sort of problems have you had with this bug?? I am sure more infections, as it seems to be the case with me...but I have heard of folks with this bug just colonizing it and having no problems with it. I guess we were given the short straw huh???? It would be interesting to know how this has affected you. I hope all is well with you and hugs to you...
Chris, thank you again for your kind words, I think I will fit right in here...all of you have given me some good insight already. Hugs to you and your family as well
((((((Everyone)))) and thanks....Cepaciagal
Cepaciagal, Hi I'm Martha, 30 years old, diagnosed at 17 mo. old. I was wondering - are you on a transplant list? Is that an option for you or not? I myself am getting close to transplant, which is exciting and scary! I would think since you're on a vent, have cepacia, on bi-pap (from other posting) - those would qualify you. What are your PFT's like? Just curious! Keep up the great attitude!!
Martha CF, 30
Martha CF, 30
NoDayButToday
New member
Welcome!
Hi Martha...no, I am not on a transplant list...I am not eligible. I have severe neuromuscular disease as well, progressive...I am mostly wheelchair dependent now. Boy, I guess I did swim in the wrong end of the gene pool didn't I???? My diaphragm doesn't really work at all, so they would never put new lungs into someone who would still need a vent to breathe, at least that is what the jist of things are over here. So, I just go day to day....I know I won't llive to be 80, but you know what, I am here today and that is good. Another day graced on this planet is a gift....I have accepted all of this, although it is reallly hard to do so sometimes. I have children 11 and 13 years old....I just want to see them grow up as much as I can.
Coll, thanks for the welcome!!!
Hugs to all of you, Cepaciagal (aka Sunny in other groups)
Coll, thanks for the welcome!!!
Hugs to all of you, Cepaciagal (aka Sunny in other groups)
OH I forgot..prior to the vent, my PFT's were in the 20% range of expected. When the doc takes me off the vent to see what I can do, my tidal volumes are a mere 150-200cc's of air. If you lie me flat, I can't breathe at all, or very little...tidal volumes are about 50 then. Hugs again, Cepaciagal