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Amyloidosis in CF

Dear expert team,

Do you know an expert who is well experienced in amyloidosis in Cystic Fibrosis? Especially the kidneys are severely affected by the amyloidosis.
The FEV1 is approx. 35%. A chronic colonization with pseudomonas exists for many years. Age 45 years.

Many thanks for your answer.

In fact, nephrologists are typically well schooled in amyloidosis, but we, who are dealing a lot with adult CF patients, have also gained quite some experience. A particular problem is the possible loss of protein via the kidneys what a CF patient cannot stand very well. In this case, an individual solution together with the nephrologist has to be found.

It surely makes sense to contact a CF center for adult CF patients if you are not attended by such a center yet anyhow. At a university hospital you are in best hands with such a problem since there is not only a CF center with possibilities for lung transplantation but also a nephrology department where a program for kidney transplantation exists.

Best regards,
Prof. Dr. TOF Wagner