Pulmonary Fibrosis Support Group
Diffuse parenchymal lung disease (DPLD), also known as interstitial lung disease, refers to a group of lung diseases, affecting the alveolar epithelium, pulmonary capillary endothelium, basement membrane, perivascular and perilymphatic tissues. The term DPLD is used to distinguish these diseases from obstructive airways diseases. Most types of DPLD involve fibrosis, but...
husband diagnosed just 6 months ago, in hospital for pneumonia for 2 weeks, now resolved, however, his lungs are not responding and he's on the highest oxygen available. duke will not accept him as a lung transplant now becuase of the oxygen. Does ANYONE know of any other treatment for this condition...he's on most of the known drugs..it seems like every day they give him more drugs to take. I haven't told him about the rejection of Duke, that's going to kill him for sure...we always thought the lung transplant for a backup. I think they want to put him on a feeding tube and a ventilator...and i keep saying no. I do't kow what I'm doing.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
My heart just goes out to you and your husband--you are in such a difficult spot to have to make these decisions under such stressfull circumstances! My first prayer for you is that God gives you peace and second that you have doctors there in the hospital that you can trust to advise you. Might it help to ask for a meeting with family members, the docs, and a hospital social worker--so you have a whole team? If possible--ask if they have a medical family therapist (in addition to social worker if possible)--I used to do this when I worked in a hospital 10 years ago--before I was ever diagnosed--and the families seemed to find it helpful. Sometimes families wanted to include clergy in the discussions. Something like this might help if you are needing to decide about a ventilator and feeding tube, etc.
Since I was only diagnosed myself a month ago I am still trying to gather information myself--hopefully someone else will respond with something concrete for you in terms of treatments....I don't know your circumstances, but I am now going to U of Chgo but may go to Mayo Clinic for a consultation if I can swing it....
Sorry I can't offer more information--but you both are in my prayers! Kauailover