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My Cf clinic is not for the elderly with CF nor their hospital for CF anyone… the CF ward although newly redone reeks of aspergillus mold.. it is in the masks and the linens and all things that can retain smell. The building is old and in need of a complete redo. As a patient, I guess I phone when I think I need to see a doctor… it was at one time every three months that I would be scheduled to come in … no longer… no doctor has ever made future appointments in the past four years. I have to phone if I need to see someone. I have been given a new medication for bones which I had to stop using, there was no follow-up appointment made to check on me. It is quite disheartening. I did originally travel to North Carolina at UNC however it now has become quite impossible. My sister goes there and her doctors see her every 3 months… I’m lucky to get an appointment with someone in 3 months. (oh unless I want to do it facetime) I think is it a bit disgraceful that there is such a lack of care and concern for the patient..this past year, I had complained quite a bit of difficulty in breathing… 3 months later a heart attack. Not one doctor looked into it, it was just written off as CF related issues even though my record shows my mother died of it. It is sad there is no good clinic here. It is sad that an elderly newer diagnosed CF patient is ignored… the young elderly (18 and over) seem to be all they are concerned with. I may have not had a heart attack were anyone listening to me. But so it goes. I wish I could move but I am not able.
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The CF clinic that I visit is so incredibly familial and caring – and treat even me (not the CF patient, but the spouse of the CF patient) like they’ve known me my whole life, understand and support me in my integral role as the CF caregiver, and with true love and regard.
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