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To "Anonymous"...
I have found this site to be extremely helpful and supportive...full of great information and people! While I think our situation differs somewhat since we're finding out so late in life, everyone at this site has been SOOO supportive!
I'd be intersted to know your history if you'd be comfortable sharing that....I've been sick for years, off and on, unfortunately was a smoker as well (quit January 7th and now smoke only in my dreams!), but am really angry right now as I feel that this should have been diagnosed years ago, but no one wanted to connect the dots because of my smoking history or they were just stupid...I'm not sure which.
So, I'm still coming to terms as well and we have some unique issues - like everything we've always done to try to get over whatever the illness of the month was I'm now finding was the worst thing to do for CF....
My FEV's are at 67% and I just started Pulmozyme this week. I'm back on antibiotics again (oral), and I think they're helping. Also have been put on enzymes, vitamins, and most recently a laxative as the enzymes are working a little too well.
If you ever want to chat, feel free to e-mail me at abloedel@westwood.edu
Amy 36 w/CF
I have found this site to be extremely helpful and supportive...full of great information and people! While I think our situation differs somewhat since we're finding out so late in life, everyone at this site has been SOOO supportive!
I'd be intersted to know your history if you'd be comfortable sharing that....I've been sick for years, off and on, unfortunately was a smoker as well (quit January 7th and now smoke only in my dreams!), but am really angry right now as I feel that this should have been diagnosed years ago, but no one wanted to connect the dots because of my smoking history or they were just stupid...I'm not sure which.
So, I'm still coming to terms as well and we have some unique issues - like everything we've always done to try to get over whatever the illness of the month was I'm now finding was the worst thing to do for CF....
My FEV's are at 67% and I just started Pulmozyme this week. I'm back on antibiotics again (oral), and I think they're helping. Also have been put on enzymes, vitamins, and most recently a laxative as the enzymes are working a little too well.
If you ever want to chat, feel free to e-mail me at abloedel@westwood.edu
Amy 36 w/CF
Hi Amy.
Discovering that I have CF was a complete shock to me.
Up until age 25, I was never ill. From 25 to 35, I occassionally had to use antibiotics to treat lung infections. I think in that time period I used antibiotics maybe a total of 4 times. On my 35th birthday, I got ill and remained ill. I was treated with one antibiotic after another. I think I used ten different antibiotics before the clinic I was going to got smart and referred me to a lung specialist. A CT scan of my lungs was performed and a culture was taken. My CT scan indicated that I had bronchiectasis and my culture tested positive for Pseudomonas. The lung specialist immediately sent me for a sweat test (twice). They both came back positive.
Genetic testing has shown that I am a DF508. The other mutuation has not been determined.
I am now on Zithromax and tobramycin trying to combat the Pseudomonas that keeps appearing in my culture.
My PFT is presently at 75%.
Although physically I can function on a daily basis, emotionally I am still a wreck. I am still trying to get over the anger stage.
I am sure you feel the same way.
Support at this point has been limited given that I have not yet chosen to disclose my illness. At this point in time, I have disclosed that I have CF to my parents and husband only. Both are pretending that this disease does not exist. They are silent on the subject; which makes dealing with this even harder.
Well, this is my story. I can totally relate to you. How are you doing emotionally?
Anonymous.
Discovering that I have CF was a complete shock to me.
Up until age 25, I was never ill. From 25 to 35, I occassionally had to use antibiotics to treat lung infections. I think in that time period I used antibiotics maybe a total of 4 times. On my 35th birthday, I got ill and remained ill. I was treated with one antibiotic after another. I think I used ten different antibiotics before the clinic I was going to got smart and referred me to a lung specialist. A CT scan of my lungs was performed and a culture was taken. My CT scan indicated that I had bronchiectasis and my culture tested positive for Pseudomonas. The lung specialist immediately sent me for a sweat test (twice). They both came back positive.
Genetic testing has shown that I am a DF508. The other mutuation has not been determined.
I am now on Zithromax and tobramycin trying to combat the Pseudomonas that keeps appearing in my culture.
My PFT is presently at 75%.
Although physically I can function on a daily basis, emotionally I am still a wreck. I am still trying to get over the anger stage.
I am sure you feel the same way.
Support at this point has been limited given that I have not yet chosen to disclose my illness. At this point in time, I have disclosed that I have CF to my parents and husband only. Both are pretending that this disease does not exist. They are silent on the subject; which makes dealing with this even harder.
Well, this is my story. I can totally relate to you. How are you doing emotionally?
Anonymous.
To the original poster - are you still out there?
To the person that was just diagnosed.
I know that it must be hard for you. Most of us have not know any other way of life. We were diagnosed as infants or children. I cannot imagine finding out now. The good news is that you found this web page. You will find LOTS of information and support here. We will all do what ever we can do to answer questions, or just be there to listen. Feel free to ask anyting, we have all been there! You can e-mail me privately if you would like as well. My e-mail is Rosisnpete@yahoo.com. Good Luck to you.
Rosie
To the person that was just diagnosed.
I know that it must be hard for you. Most of us have not know any other way of life. We were diagnosed as infants or children. I cannot imagine finding out now. The good news is that you found this web page. You will find LOTS of information and support here. We will all do what ever we can do to answer questions, or just be there to listen. Feel free to ask anyting, we have all been there! You can e-mail me privately if you would like as well. My e-mail is Rosisnpete@yahoo.com. Good Luck to you.
Rosie
P
PeteRose
Guest
I have double delta 508's. By the way, I did not tell you last time - I am 43.
Rosie<img src="i/expressions/rose.gif" border="0">
Rosie<img src="i/expressions/rose.gif" border="0">
Hi Rosie and Eileen,
This is "Anonymous" once again. From now on I will sign off as Dxat35 so that you can identify me.
Rosie and Eileen, if it is not too personal, I would like to know a little about your history:
At what age were you diagnosed?
Did you have symptoms before the diagnosis, i.e. were you constantly ill before the diagnosis or did you become "more ill" once it was finally diagnosed?
What treatments are you currently following?
How often do you get ill and what treatments do you have to follow when you are ill? Do you require hospitalization and IV treatments?
At the time of diagnosis, were you working? If so, were you able to continue working or did you decide to slow down and work part-time?
Essentially, I am trying to determine how CF will affect my daily life. I understand that CF impacts each individual differently, but I am simply trying to draw on other people's experiences.
Thanks for the support. I really need it right now.
Dxat35
This is "Anonymous" once again. From now on I will sign off as Dxat35 so that you can identify me.
Rosie and Eileen, if it is not too personal, I would like to know a little about your history:
At what age were you diagnosed?
Did you have symptoms before the diagnosis, i.e. were you constantly ill before the diagnosis or did you become "more ill" once it was finally diagnosed?
What treatments are you currently following?
How often do you get ill and what treatments do you have to follow when you are ill? Do you require hospitalization and IV treatments?
At the time of diagnosis, were you working? If so, were you able to continue working or did you decide to slow down and work part-time?
Essentially, I am trying to determine how CF will affect my daily life. I understand that CF impacts each individual differently, but I am simply trying to draw on other people's experiences.
Thanks for the support. I really need it right now.
Dxat35
Hi everyone, My name is Becky and I am a late diagnosis as well. I was diagnosed at 30. 2 weeks after my 30th b-day. I am now 35 and have been through the emotions you are all going through right now. It took me a long time to get over the anger. I was so mad. Because I have always had cough and lung infections all my life. But was not (sick) per say. I was told it was allergies, asthma, carpal tunnel ( for the arthritis), bronchiactisus (wass from scar tissue that some people just get from coughing). It seemed like they had an answer for anything except the right thing. I even seen several different dr's. But since then I have found out how little regular MD's know about CF. It is so not common. I understand the misdaignosis but dont at the same time. I have since been diagnosed with Cf related arthritis, bronchiactisus, pancreatitus (which I was diagnosed with at 17), scarring on my lungs from psudonomus (sp). That makes me probly the most angry because I didn't know how much damage my infections wer causing and now my lung capacity is 40%. I have found so much comfort in this site and a site called cystic-l. The people are so informed about everything you go through. It's scary just starting but the thing you really have to remember is just because someone had a certain CF symptom doesn't mean you will. Because there are so many severities of the disease. I am told I have a mild case up until 34 and then it kind of speeded up which is why their at 40%. They went from 65% to 40% is approx 3 months. At diagnosis they were at 85%. Well enough about me. My email is sam001@charter.net if either of you want to talk. or I come on here almost every day.
Hi Becky,
Thank you for your response.
I can entirely relate to the misdiagnosis. The doctor that I was seeing at a clininc before I started seeing the lung specialist, on one occassion told me to go home and "fight it off on my own", even though I was coughing up mucus for 3 hours straight in the morning and coughing the rest of the time after that. I eventually developped pneumonia. Talk about a misdiagnosis. I never returned to the clinic informing them that the final diagnosis was CF. I'm sure they would have been surprised as well.
You mentioned in your response that it took a while for you to get over your anger. Can you define what you mean by a while? Was it months? years? Have you finally come to accept this disease as a part of your life or do your emotions fluctuate depending on how you are doing healthwise?
Dxat35
Thank you for your response.
I can entirely relate to the misdiagnosis. The doctor that I was seeing at a clininc before I started seeing the lung specialist, on one occassion told me to go home and "fight it off on my own", even though I was coughing up mucus for 3 hours straight in the morning and coughing the rest of the time after that. I eventually developped pneumonia. Talk about a misdiagnosis. I never returned to the clinic informing them that the final diagnosis was CF. I'm sure they would have been surprised as well.
You mentioned in your response that it took a while for you to get over your anger. Can you define what you mean by a while? Was it months? years? Have you finally come to accept this disease as a part of your life or do your emotions fluctuate depending on how you are doing healthwise?
Dxat35
It took a few months easily. But I came to believe the anger really wasn't helping me out any. It is hard when your health fluctuates. I get emotional when I have to go through a new symptom and a new med because of the symptom. Its like reality hits you in the face again. But it will subside in a couple days and you start over with your new regimine. Things get back to "normal". I dont know I guess I really started to have faith in my CF dr. I have been seeing her for 2 yrs now. The only one I'v ever been too. She's very caring and tries to explain what things can happen, what we can do about it if it does. The not knowing part of CF is the hardest on me. I do accept CF as part of my life but that doesn't mean I'm giving in to it. I try really hard to keep everything in check. Exercise each day, TRY to eat the right stuff. I have a very hard time reaching into the fridge and eat a veggie, I'd much rather have something good. I have to force veggies on me. HeeHee. Its very difficult to not let CF absorb your life though. I went through a period where I didn't want to push myself because I didnt want to get worse or symptoms to come into play. But then it gets easier. I know thats not why I get worse but you think that at first, and I can still do the things I used to just maybe not as fast. I dont know, you'll come into your own style of dealing. But talking about it with other CF'ers has helped tremendously. It's hard to talk to your family and friends about stuff because 1)they dont really know what your going through emotionally or physically. 2) you don't want to shove it down their throat all the time while you try to understand whats going on with your body. Dont get me wrong we still talk about it with family and friend but it's not the same. Everyone that I'v talked to goes through a phase of kind of denial, and you'll just get through it and realize one day that it's ok to feel the way you do. Becky 35wCF in Mich
I have told my husband, daughter, parents, a few close friends, and my direct boss at work (I'm a finance manager and have 10 direct reports, so since he was so supportive while I was out in January, I felt he deserved to know what was going on)....
Anway, my husband initially acted like I just had a cold or something, like it wasn't a big deal. He's coming around now and asking lots of questions, how I'm feeling, making sure I do my meds, etc. His mom died when she was in her late 40s from brain cancer, so I think he knew how serious this was, but needed to take the time to cope with this in his own way. The CF is causing a total lifestyle change for us...places we go, things we eat, planning for the long term, etc. We are going to put our house up for sale and find something smaller and cheaper...sort of planning for paying for pulmozyme and me having to transition from full time to part time work...
My parents - my dad just says he loves me, doesn't ask me ANY questions...I think he's just letting my mom take over that department. My mom works at a hospital and knows my CF docs and geneticists on first name basis and is much more familiar with "worst case scenarios", so she's still pretty freaked out.
Most of my friends have been supportive, although one tried to turn it around and make this about her (which I thought was interesting)....I have found that this really makes you figure out who your friends REALLY are.
My daughter is handling this best of all. She's 16, a junior in high school, and really sensitive, old soul. She's reading all she can and telling me about anything she reads about that I can do to stay healthy. Yes, she does get teary eyed, but really seems to have a great handle on staying focused on the positives.
I have found at work I get really ticked right now when someone comes and whines to me about how they have to go home because they have a cold...I'm sure I'll get over that, but I never though I'd be like that.
My boss has really been tremendous....we've agreed that I can work at home when I'm sick and on antibiotics and that if my health declines further, we can look at a part-time schedule in the office or a full-time schedule at home or some combination of the two. We both agree that I cannot manage a staff if I'm not in the office, but there are plenty of projects I can do from home. He knows my goal is to stay on the insurance as long as possible.
I just started the pulmozyme and flutters. (PFT's at 67% prior to starting this treatment - I'll keep you posted on the progress) The other night it made me cough so hard I threw up, but other than that, it's been relatively easy to do. Still trying to regulate my pancrecarb and laxatives - that's frustrating! I have done everything they (CF clinic staff) has asked except for giving up the caffeinated soda...anyone else been asked to do this?
I'm sorry all of you have CF, but it's nice to have someone to talk to who can relate to everything.
We're having a big snowstorm here in Denver today....seems like they always wait til Spring to come...
Take care, stay warm!
Amy
36 w/CF in Denver
Anway, my husband initially acted like I just had a cold or something, like it wasn't a big deal. He's coming around now and asking lots of questions, how I'm feeling, making sure I do my meds, etc. His mom died when she was in her late 40s from brain cancer, so I think he knew how serious this was, but needed to take the time to cope with this in his own way. The CF is causing a total lifestyle change for us...places we go, things we eat, planning for the long term, etc. We are going to put our house up for sale and find something smaller and cheaper...sort of planning for paying for pulmozyme and me having to transition from full time to part time work...
My parents - my dad just says he loves me, doesn't ask me ANY questions...I think he's just letting my mom take over that department. My mom works at a hospital and knows my CF docs and geneticists on first name basis and is much more familiar with "worst case scenarios", so she's still pretty freaked out.
Most of my friends have been supportive, although one tried to turn it around and make this about her (which I thought was interesting)....I have found that this really makes you figure out who your friends REALLY are.
My daughter is handling this best of all. She's 16, a junior in high school, and really sensitive, old soul. She's reading all she can and telling me about anything she reads about that I can do to stay healthy. Yes, she does get teary eyed, but really seems to have a great handle on staying focused on the positives.
I have found at work I get really ticked right now when someone comes and whines to me about how they have to go home because they have a cold...I'm sure I'll get over that, but I never though I'd be like that.
My boss has really been tremendous....we've agreed that I can work at home when I'm sick and on antibiotics and that if my health declines further, we can look at a part-time schedule in the office or a full-time schedule at home or some combination of the two. We both agree that I cannot manage a staff if I'm not in the office, but there are plenty of projects I can do from home. He knows my goal is to stay on the insurance as long as possible.
I just started the pulmozyme and flutters. (PFT's at 67% prior to starting this treatment - I'll keep you posted on the progress) The other night it made me cough so hard I threw up, but other than that, it's been relatively easy to do. Still trying to regulate my pancrecarb and laxatives - that's frustrating! I have done everything they (CF clinic staff) has asked except for giving up the caffeinated soda...anyone else been asked to do this?
I'm sorry all of you have CF, but it's nice to have someone to talk to who can relate to everything.
We're having a big snowstorm here in Denver today....seems like they always wait til Spring to come...
Take care, stay warm!
Amy
36 w/CF in Denver
Hi Amy,
I am sorry that the pulmozyme is making you ill. Please forgive my ignorance, but what is this medication used for? My doctor never mentioned it to me.
I understand how you feel when a co-worker complains that he/she has to go home because of a cold. I have felt the same way, but have tried to remain sympathetic. It doesn't always work. Sometimes he/she does detect a little sarcasm in my words.
I see that you have or are considering reducing your work load to part-time. I have considered it myself. However, financial circumstances do not permit it at the present time. We have a 2 year old daughter (adopted from China). Raising a child requires tremendous financial resources and therefore I must continue to work as long as I can. Keeping up with the schedule is not always easy. I begin my morning at 5:30 a.m. and do not stop until my daughter is in bed which is around 8:00 p.m.
Just as an aside, I was diagnosed with CF 7 months after we got our daughter. So not only are we trying to deal with the CF issue, but we are also trying to cope with the adaptation process. It has not been easy. My daughter has reacted strongly. She has now been with us for a year and continues to challenge us. We are under a tremendous amount of stress.
Sorry for my rambling..I just needed to vent.
Dxat35
I am sorry that the pulmozyme is making you ill. Please forgive my ignorance, but what is this medication used for? My doctor never mentioned it to me.
I understand how you feel when a co-worker complains that he/she has to go home because of a cold. I have felt the same way, but have tried to remain sympathetic. It doesn't always work. Sometimes he/she does detect a little sarcasm in my words.
I see that you have or are considering reducing your work load to part-time. I have considered it myself. However, financial circumstances do not permit it at the present time. We have a 2 year old daughter (adopted from China). Raising a child requires tremendous financial resources and therefore I must continue to work as long as I can. Keeping up with the schedule is not always easy. I begin my morning at 5:30 a.m. and do not stop until my daughter is in bed which is around 8:00 p.m.
Just as an aside, I was diagnosed with CF 7 months after we got our daughter. So not only are we trying to deal with the CF issue, but we are also trying to cope with the adaptation process. It has not been easy. My daughter has reacted strongly. She has now been with us for a year and continues to challenge us. We are under a tremendous amount of stress.
Sorry for my rambling..I just needed to vent.
Dxat35
Hi Amy why do you have to pay for your Pulmozyme? Sometimes you wil cough that hard and throw up, but it may not be Pulmo it may be just because you coughed really hard. I'v done that befor. But if it happens all the time it may be your Pulmo. I just started having the intestinal part of it last summer. Instead of Laxatives (which are very harsh to your system) I take Mirelax. The dr prescribed it to me. I take it every few days to keep things normal. You should ask about it if your taking alot of the laxatives. Why do you have to give up caffiene cola? I havent been givin a diet. Just need to eat more fruits and veggies and fiber.
I know what your saying about friends though most of mine were supportive as well but there's always one you'll have that just ask how you are and arnt really interested. HeeHee. But that's ok. I don't talk to her much. I heard your having a snow storm today and 70's on Thursday. It sounds like Michigan. HeeHee.
DXat35 Pulmozyme is used to thin out mucus in your lungs so your able to cough it out. You use it in your nebulizer once a day. I'm sorry your so stressed. Can your relatives help you with your transition with your daughter? Becky
I know what your saying about friends though most of mine were supportive as well but there's always one you'll have that just ask how you are and arnt really interested. HeeHee. But that's ok. I don't talk to her much. I heard your having a snow storm today and 70's on Thursday. It sounds like Michigan. HeeHee.
DXat35 Pulmozyme is used to thin out mucus in your lungs so your able to cough it out. You use it in your nebulizer once a day. I'm sorry your so stressed. Can your relatives help you with your transition with your daughter? Becky
Hi Becky,
Thanks for the info re<img src="i/expressions/face-icon-small-tongue.gif" border="0">ulmozyme. I will speak to my doctor the next time I see him. This may be helpful since I find that my mucus is quite thick.
As for my daughter, she is an insecure little girl. There are only a few people she will stay with, i.e. her mom and dad, her grandparents and surprisingly, her caretaker (daycare). All sources have been a tremendous help. But even so, we are still tired. Hopefully, she will come to feel more secure in time.
Dxat35
Thanks for the info re<img src="i/expressions/face-icon-small-tongue.gif" border="0">ulmozyme. I will speak to my doctor the next time I see him. This may be helpful since I find that my mucus is quite thick.
As for my daughter, she is an insecure little girl. There are only a few people she will stay with, i.e. her mom and dad, her grandparents and surprisingly, her caretaker (daycare). All sources have been a tremendous help. But even so, we are still tired. Hopefully, she will come to feel more secure in time.
Dxat35
Hi All:
Yes, we had a snowstorm here in Denver..started early Sunday morning and is letting up now. It was 75 here on Thursday, but that's "springtime in the Rockies" for you....as they say in Colorado, if you don't like the weather, just wait 10 minutes...by the way, I was born in Michigan, but moved to Colorado as a kid. Still have a lot of family in Grand Rapids.
Re my pulmozyme treatments, I do think that it's just that after I do the treatment, the mucus is sooo loose that I can cough it up, but sometimes it just makes me gag. I have already figured out that if I don't eat at least two hours before I do the treatment that helps.
The laxative I'm on is called Glycolax...is that similar at all to the Miralax you were talking about?
Has anyone had problems with eczema and joint aches? I have had eczema off and on my entire life, but it's always been confined to my hands. Lately, it's been on my hands, arms, legs, feet and stomach....it's driving me crazy. In addition, the joints in my hands, hips and knees are constantly aching - the joints in my hands feel as though they're swollen....I'm trying not to make every symptom I have a "CF" symptom, but being a newbie, I'm just not sure....
To Dxat35....my daughter was quite the handful when she was younger...granted, I did not know at the time that I had CF, but I was sick off and on, and I was also single....thank GOD I had my parents to help me out with her. She too had only a couple of people she would stay with, constantly had ear infections, and did not sleep through the night until she was nearly 4 years old....but, once she started pre-school (at around 3-1/2), she really came out of her shell, and became an outgoing little girl...now she's quite an amazing young woman! So, I know it's hard, but hang in there...it will get better.
BTW, my gene mutation is DF508, other one is undetermined...trying to decide whether to do the more comprehensive blood test or not (after insurance pays on this, this one will cost me $1000)...other than curiosity, has anyone found that there is a compelling reason to have this info?
Happy Monday everyone!
Amy
36 w/CF in Denver
Yes, we had a snowstorm here in Denver..started early Sunday morning and is letting up now. It was 75 here on Thursday, but that's "springtime in the Rockies" for you....as they say in Colorado, if you don't like the weather, just wait 10 minutes...by the way, I was born in Michigan, but moved to Colorado as a kid. Still have a lot of family in Grand Rapids.
Re my pulmozyme treatments, I do think that it's just that after I do the treatment, the mucus is sooo loose that I can cough it up, but sometimes it just makes me gag. I have already figured out that if I don't eat at least two hours before I do the treatment that helps.
The laxative I'm on is called Glycolax...is that similar at all to the Miralax you were talking about?
Has anyone had problems with eczema and joint aches? I have had eczema off and on my entire life, but it's always been confined to my hands. Lately, it's been on my hands, arms, legs, feet and stomach....it's driving me crazy. In addition, the joints in my hands, hips and knees are constantly aching - the joints in my hands feel as though they're swollen....I'm trying not to make every symptom I have a "CF" symptom, but being a newbie, I'm just not sure....
To Dxat35....my daughter was quite the handful when she was younger...granted, I did not know at the time that I had CF, but I was sick off and on, and I was also single....thank GOD I had my parents to help me out with her. She too had only a couple of people she would stay with, constantly had ear infections, and did not sleep through the night until she was nearly 4 years old....but, once she started pre-school (at around 3-1/2), she really came out of her shell, and became an outgoing little girl...now she's quite an amazing young woman! So, I know it's hard, but hang in there...it will get better.
BTW, my gene mutation is DF508, other one is undetermined...trying to decide whether to do the more comprehensive blood test or not (after insurance pays on this, this one will cost me $1000)...other than curiosity, has anyone found that there is a compelling reason to have this info?
Happy Monday everyone!
Amy
36 w/CF in Denver