Average age

Question

Hello,
my partner suffers from CF and I have a few questions. However the treating physician has no time to answer them.
How is the average age that a CF Patient can reach before he needs a transplant? (My partner is 21 years old). Respectively, can he also with his actual lung, if he takes his medication regularly and inhales e.g. reach the age of 70 or is this impossible?

Answer

Dear questioner,
your questions cannot be answered in general, as the course of the illness CF can be very different in the single case and one has always to consider the individual course. Statistical data does not help really further here if the questions concern an individual human being. Here I would nevertheless recommend to get in contact with the treating physician of your partner, who knows all results and the course of the illness well. This is for sure not an easy talk, therefore I recommend to make an extra appointment for this with the treating physician. Our answer can for sure be a help during this talk.
Similar questions had been adressed to our expert team in the past, last one from November 2016. At that time, somebody wanted to know how the actual life expectancy was for deltaF508 homozygous patients. Prof. Wager answered that question with the following sentences:
"Statistically analysed numbers - as for example the middle or the median survival with a certain illness - describe always a spectrum of better and worse and frequent courses. Such numbers do not allow and are not suitable for an indivdual prognosis. One can in no case derive from those numbers, how long a patient, who is sitting next to oneself, will still live. This is even not possible, if one has treated a patient for a long time and knows all about his special problems and additional illnesses and risks."
Therefore a statement when a CF Patient has to be transplanted or if there will be a necessity to transplant at all, is not possible to make from here. In general and statistically it can be said, that the life expectancy of CF patients has improved markedly in the last decade. Actually, more than half of the CF patients are in the adult age. From the CF registers it can be said, that there are patients, how have reached the 70. year of life. It is important, that we can assume, that a child born today with CF has in the average a much better prognosis, then a patient born 20 years ago.
If you are interested in statistics and demographical data in case of CF, you can have a look at the reports from the different registers (links below). I would like to emphazise, that a table, where we can see the median and or the average survival dependent on sex and/or year of birth or other aspects, is not available, as the groups are too small for the respective year.
Links [in German]:
Deutsches Mukoviszidoseregister Qualitätssicherung Mukoviszidose 2012
https://muko.info/fileadmin/redaktion/datei_gruppen/muko_institut/Register/Berichtsbaende/Qualitaetssicherung_2012.pdf
ECFS Patient Registry, Annual Data Report 2014
https://www.ecfs.eu/sites/default/files/general-content-files/working-groups/ecfs-patient-registry/ECFSPR_Annual%20Report%202014_Nov2016.pdf
Cystic Fibrosis Foundation Patient Registry, Annual Data Report 2014,
https://www.cff.org/2014_CFF_Annual_Data_Report_to_the_Center_Directors.pdf/ (falls dieser Link durchs Anklicken nicht funktioniert, dann in Google Suchfeld reinkopieren)

I hope to have helped you with may remarks and stay with my best regards,
Yours
Dr. med. Christina Smaczny

26.05.2017