Hello.My name is Christine & I'm a 24yr woman with Cf. I'm currentally waiting to be evluated to be put on a transplant list at Duke Unvis.To be blunt my health sucks. My health started to decline within the past 3 years. When I was young I had alot of close friends with CF, but they've all passed away-years ago.Since then, I've been scared to talk to new cf people.I really miss haveing people who actually have an idea of how I'm feeling,what I go through etc. I've gone through so much with my CF & I'm so curious to know if they're other people out there that have been through similar stuff. For instance, I get massive back pain,I figure its from my coughing.This is just one of the things I would like to know if others feel. I am also very happy to help anyone else. My email address is "dietrichc79@aol.com".Hope everyone has a nice hoilday.Christine
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
stressed,looking for another CF person to talk to
- Thread starter anonymous
- Start date
I hope you get a ton of responses by other CF people. I don't have it but care for a 15 yr old girl with it. She was not diagnosed till she was 8 & thru the years she has progressed, possibly faster because of the lung damage caused before diagnosis. Nothing I say helps her attitude I cannot begin to relate. I can only make the good days great & sympathize on the bad days. I admit I am not very good at it. I have learned alot in the last few years. She has declined 15% in the last year and just left a 21 day stay in the hospital. We left for a major shopping trip & six flags the same day. She periodically has bad chest & back pains from couching. you can even hurt your ribs from couching. She also has pluracy often & looses her voice often from coughing. One of her CF friends was taken off the transplant list & put on hold due to taking Zithromax. God bless all with CF & the families that care for them. It has been very stressful on our family. Her main problems are chronic sinusitus (we live in the south) it's very bad this year, she also has MRSA staph infection in her lungs. I am exploring herbal remedies such as oregano oil which I have read online about lab rat testing that it works as well & sometimes better than vancamyacin on staph. But until human tests are done the Dr's say NO. Well wishes to you!!
bowlingguy
New member
christine i too miss some of my cf friends, being hospitalized twice a year from 12-21 at childrens hospital of losangeles, I gained many close cf friends. But after transfering to usc it wasnt the same atmosphere, and was hard to build relationships with the other cfers. Im about to have my 33rd bd, and would love to talk to you about your cf. I too am going into the transplant process, I went through most the testing for it still need a couple then ill be listed, inactive though as I dont think im quit ready to be active. anyway my email is crank0r@adelphia.net. And I'm sorry about your health being poor these last 3 years, hopefully you have a strong support system at home. Have a nice easter and drop me an email and we can talk more. Paul
Hi Christine. I have cf too. I've been waiting for a transplant for going on now for 7 yrs in May. I know about all those tests, went through it in '98, so I know what u'r going through or about to go through. Im waiting a liver transplant at Cleveland Clinic in Ohio, USA. I want to have kids soo bad but they say no until my transplant. Well I'm 21 going to be 22 on the 23rd of this month. I woul really like to talk to you. My email addy is FanofNo8DaleJr@aol.com, so whenever u'r online u can IM me or email me whatever u like. Well chat with ya later, hope u do well. Take care & God BlessCourtney
Hi Christine, i'm 30 since March and live in the south of Ireland. I was dignosed when i was a few weeks old, i suffered mostly with my tummy and not going to the loo for a bit until 7 years ago when my lungs started causing me trouble and i also got epilipsy instead - a lot of the other pwcf got diabetes - im on medicine for cf, epilipsy and my sinus, i have been in hospital a few times and ya you do get pains from coughing and it does hurt all over. Some days i have good days but others are bad, I just finnished doing the ECDL course from home with the help of the cf asociation and it gave me a reason to get up. If you ever need a chat or a laugh email me at sesullivan@eircom.net and mention cf in the subject just in case it gets deleted. take care.Sharon
Mockingbird
New member
Hello. My name is Jarod and I am new to the site. I am 22 with CF, and was very healthy until about half a year ago. Now, all of a sudden, all sorts of new things are cropping up, like the back pain you mentioned. I really hate that, especially when I have a bad cough and the pain makes me want to collapse. Also, I've been having problems with arthritis, sinus headaches (from nose polyps), coughing up blood, stomach pains well the list goes on. I understand what it is like to suddenly have your heath drop off for no apparent reason. I do not wish to think about how I am going to be doing three years from now. I am just about to finish college so my life should be starting, right? Hmmm, it feels like it is just beginning to wear down. Also, I have not seen any CF friends from my childhood for a long time, and as far as my other friends go... well, they are very kind and sympathetic, but they do not really grasp what I am going through. As I'm sure everyone can imagine, I've been a little emotionally unstable (meaning I've been coming very close to having embarrassing crying episodes in front of many people who would not understand). For someone who usually keeps his emotions bottled up inside (and yes, I know that is not healthy), this is a very new experience. Something that I am trying to convince myself is to just stop worrying about things, handle each day as it comes and let tommorrow worry about itself. When I am stressing out about my future or my health I am not enjoying life, and with my health declining I want to make things count. Well, that is what I am personally working on, anyway. Obviously, it is not as easy as it sounds (which is another something that many friends fail to grasp). I want to thank everyone for their testimonies here... after two not so great weeks finding this site was a nice turn. If anyone cares to email me, it is jarodbulthuis@hotmail.com.Jarod
hey everyone! i am a 23 yr old with cf. i just found this site and i am so thrilled that i can talk to people with the same feelings and emotions i encounter on a day to day basis. i, too miss my childhood friends with cf. i now only have one close friend that has cf. one thing i want to ask is how does everyone keep their hope up? i am a very positive person, but there are some days when i don't want to smile and hate having the body i have. i workout and i am very lucky to be healthy right now, but it scares the crap out of me knowing my life could be cut short. i have so much that i want to do, especially raising a family. i have a serious boyfriend and he is so great, but i can get so depressed and it scares him (i think) knowing i'm scared. get it? i will never regret having cf, but i do want to be guaranteed a long life. i think i just need to talk to other people with cf. it really helps talking to other adults with this disease. please feel free to write me back...liotan46@yahoo.com... God bless
bowlingguy
New member
most cfers i have met have always been the type that enjoy life to the fullest, and seem to realize through every day they they are blessed to be alive. although i have met the extremely depressed also, these are usually the 1;s that there symptoms hit them late in life and all of a sudden they are compounded with the fact they have to deal with changing lifestyles, all i can say, is live life to the fullest, and always remember how blessed you are to be alive, knowing that 1 day, like everyone else there will come a time you wont be able to do certain things, and even though it will come before people without cf its just a part of life. I think oftem how i wished I was healthy enough to have had a nice career or a house of my own. Sometimes I wonder if I would have continued through college, even though i was being hospitalized frequently, how different things might have been. Just be sure to do all u can and dont have any regrets. Boy am i rambling, sorry its late....anyway good luck and god bless
thanks for the advice. Paul. i really appreciate it . i know there are so many things in my life and all around me that i need to be thankful for. there are so many kids who have died at a young age or people in wheelchairs that have no concept of what's going on around them. i have a life to live and i know i will live my life to the fullest. sometimes i just need some encouragement from people who understand me. thanks again.. God bless.
My name is Clarke Johnson im 33 years old with CF i have had a double lung transplant and have been out for alomst 7 years now. I have had my ups and downs. If anybody has any questions to ask my email is souixem2@yahoo.com I will talk to anybody who has any questions about CF.