hospital visit
March 14, 2009 2:05pm
Visited my husband at the hospital rehab unit, he can't walk due to "steroid myopathy"- high doses of steroids over a long period of …
ellenb2
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About Me
ellenb2
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About Me
I'm a nurse with 2 children. My only passion or mission right now is helping my husband with this awful disease of Pulmonary Fibrosis.
I'm a nurse with 2 children. My only passion or mission right now is helping my husband with this awful disease of Pulmonary Fibrosis.
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I’m With You
i am with you and cand understand your sadness it can be very difficult watching this illness when its the person you love try and smile remember good times not just the illness my thoughts are with you xx
Little Love
from me to you , a little love . Kath
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Sorry I missed you online dear, been thinking of you. I hope to catch up with you. Take care my dear...love Kath
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These are questions for the pulmonary diagnostician that you saw. The median life expectancy is 3.5-4 years but it is very variable and is different according to how fast the progression. I have it for at least two years and even though I require constant O2, I have had slow progression. The remedy is transplant and before one gets too sick the doc will discuss this and put him on the list if he is willing to go that route. Be sure you are at a University based hospital that caters to this illness for there is little experience amongst the PCP population and they waste precious time with useless therapies like prendisone. I'm fortunate to lib=ve and be cared for at the University of Pittsburgh Medical Center where the best in the field practices through the Simmons Center for Intersitial Lung Disease. The Doctor is Kevin Gibson. You might be able to get more information by contacting them and they might put you on to a specialist that they are aware of in your area. Certainly worth a try. The address is Falk Clinic , Fifth Avenue , Oakland , Pittsburgh Pa.
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Support Groups
Close Pulmonary Fibrosis
My husband became very short of breath this past November. In December he was placed on 2liters nasal cannula then January a biopsy confirmed Pulmonary Fibrosis. He then went to 4-6liters nasal cannula. Right now he is in the hospital on a 100% non-rebreather. I'm beside myself with fear and sadness.
Treatments
- MucoMyst Somewhat Helpful
- Prednisone Somewhat Helpful
- developed "Steroid Myopathy" and cannot walk at this time.
Close Bereavement
Type: Loss of a Partner/SpouseI'm 54yr old female. I'm a nurse, a mother of 2, and grandmother of 3. I took 2 months family leave to be with my husband who recently died 3/24/2009. His birthday is today, 4/20, and the grief is just overwelming. I've gotten back to work and that's helped but then there's those stupid days that I just can't seem to cope. I will...I have no choice. I just hate this feeling so much!
Treatments
- Crying Somewhat Helpful
- Keeping Busy Somewhat Helpful
- Support Groups Somewhat Helpful
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