Journal Entry for November 8, 2007
November 8, 2007 10:00pm
Well things are ok I guess. I just got back from Toronto yesterday from yet another weekly visit. I am extremely short of breath but the …
roxyfoxy531 
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About Me
roxyfoxy531
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About Me
I am 26 years who was diagnosed at birth with CF. I recently got married (April 2005) and I am a medical transcriptionist which gives the teh opportunity to wirk from home. I also work part time at Tim Horton, mostly just to get out of the house. I have a 10-year-old step son and an 11-year-old step daughter. I love shopping and horseback riding as well as scrapbooking.
I am 26 years who was diagnosed at birth with CF. I recently got married (April 2005) and I am a medical transcriptionist which gives the teh opportunity to wirk from home. I also work part time at Tim Horton, mostly just to get out of the house. I have a 10-year-old step son and an 11-year-old step daughter. I love shopping and horseback riding as well as scrapbooking.
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Recent Activity
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Journal
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Journal Entry for October 20, 2007
October 20, 2007 10:02pm
Well I just came back Wednesday from the CF clinic in Toronto. I am really really short of breath but the docs want to hold off admitting me …
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Journal Entry for October 11, 2007
October 11, 2007 10:06pm
Well just found out yesterday that I have diabetes and need to take insulin. What fun. I kinda knew it was going to happen since I had …
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Journal Entry for August 6, 2007
August 6, 2007 10:33pm
Well I just came out of the hospital again. This time went in for hemoptysis (coughing up blood) and extreme shortness of breath. I …
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Journal Entry for July 13, 2007
July 13, 2007 10:26pm
Well guys, it's been a while since I have been able to find two seconds to sit in front of this computer and write a journal entry. Well I …
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Hugbook
Hug
what's goin on with you, girlie? ~hugsnkisses
Flower
Prayers and best wishes to you. I have meet several CFers with lung transplants. Susan
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roxyfoxy531 I have been thru an ordeal myself. I have some very positive advise for you. Read my profile, let me know if you said the prayer and if you qualify under the 4 steps to apply for L T SSDI seekgod7( hope is here)
Hug
ss you are having such a difficult time. The only thing I can think of for you is to try another transplant team at another hospital. One that is completely separate from the one who would not list you, maybe even in another state if necessary. It can't hurt to try, I wish you the best....Samantha
Hug
Hope things are going well and you're in stable condition and listed for transplant. Hope you had a good holidays despite all the health issues.
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Support Groups
Close Cystic Fibrosis
I spent my first 13 months of life at the Toronto Hospital for Sick Kids. I was born with a bowel blockage, and as I underwent surgery for that, the docs opened me up and found that I had no diaphragm and everthing was all over the place. I underwent a later surgery to replace the missing diaphragm. My mom was told that I had what they called "Failure to thrive." My left lung collapsed twice and on both occasions a chest tube was placed. I did eventually get "better" and got to go home.
Treatments
- Creon Working / Worked
- I have been recently put on this instead of Cotazym ECS 8's. Still haven't seen a difference between the two.
- Pari PEP Somewhat Helpful
- Not too bad, but only helpuf if technique is done perfectly.
- Singulair Working / Worked
- Awsome! Awesome! Awesome! I take it before bed and my chest is not tight when I wake up in the morning. Apparently, this drug is used mostly for asthma patients.
- TOBI Working / Worked
- Great! However very expensive $3,330.00 a month and not very many drug plans cover the cost.
- Prednisone Working / Worked
- Well this has been a blessing as well as a curse. I can breathe, which is a good thing, but I have gained 20 pounds, my blood sugars shot through the roof and I am now an insulin dependent diabetic. Great drug, LOTS of side effects!
- Prilosec Too Soon to Tell
- Switched from Zantac to Losec. I don't really have heartburn. The docs told me to use it because it lowers the acid levels in my stomach which in turn make my enzymes work better.
- Doxycycline Working / Worked
- In conjunction with the Septra and the TOBI, this combination of antibiotics seems to be keep things under control for a while.
- ADEKs Multivitamin Working / Worked
- I think all CFers are on some sort of fat soluble vitamin. They taste good too!
- Effexor Working / Worked
- I have been dealing with depression since I am a child. I have tried several antidepressants and this one seems to work the best and has the least side effects.
Close Parenting 'Tweens (9-12)
roxyfoxy531 hasn’t entered any details for this support group.Open Depression
Type: Clinical (Major) DepressionI can remember being mad as a child, as young as maybe 9 or 10 years old. I was always angry and frustrated at the ones closest to me, mostly Mom and Dad and sister. I could never seem to find happiness although I know now that I had a great childhood. I do have cystic fibrosis and my parents and psychiatrist all said that I was angry that I was sick, but I wasn't mad because I was sick, I was just mad at everything and everyone. My mom is bipolar, however I am not. I have severe depression.
Treatments
- Effexor Working / Worked
- One of the best...have been on this drug for about 8 or 9 years. For me, it has little or no side effects...really helps me alot.
Open Organ Transplants
Types: LungI am a 27-year-old woman who is struggling with the damaging effects of Cystic Fibrosis. In my earlier years, I did quite well with my disease. Now the doctors are suggesting lung transplant as an option. I am constantly battling lung infections, pneumonia, and shortness of breath. I am excited to know if I am a candidate or not. I have already had the preliminary appointment with the transplant doctor who explained everything to me and my husband.
Treatments
- Bactrim DS Working / Worked
- Helps control the infection in my lungs.
