Hi Marie! I think you'll get contradictory advice from many places... The beautiful story about the mom in the UK with a heart/lung transplant was MANY years post transplant -- her immune suppression levels were probably minimal -- and they can likely minimize her immune suppressants and tailor them to drugs that are acceptable for pregnancy... That is not the case with the vast majority of us.
I've known of a number of kidney recipients who have had successful pregnancies - but that is an entirely different story... Kidney transplants are where most of our drugs and treatments are developed and tested because, for every lung transplant there are probably 20+ kidney transplants and, theoretically, if rejection or some other issue occurs with a kidney -- it's not as life threatening as lungs and you can get in line for another more easily... Kidneys are generally less immune suppressed than lungs -- often with only one immune suppressant drug... For lungs -- especially early on -- we often use a cocktail of three immune suppressants, along with a cocktail of antibiotics, antivirals and antifungals early on (that are reduced or eliminated within the first 1-2 years...) Some of those drugs do not go well with pregnancy. So -- it has to be weighed whether to put our lungs at risk, versus putting a fetus at risk...
Like Liza's daughter did -- you probably should research transplant recipients who did manage to have children post transplant -- and you should probably focus on lungs (if there are any), hearts and livers -- because kidneys are really a different ball game... And, it should be understood that lungs are usually more highly immune suppressed than hearts and livers...
And -- you should probably also discuss this with your clinic and see their opinion -- they may attempt to shut the idea down immediately, but they may also be more open to it... There are always new medications in the pipeline that might allow something of this nature...
Going to the CF mummies facebook group is a good idea -- but the higher likelihood is that you're going to find a HUGE percentage of CF moms there, and not ones with lung transplants -- or not ones who had their children after lung transplant... Though we still have CF -- post transplant our health and medical issues are MUCH more focused on transplant than they are on CF so the medical guidance you might get, regarding pregnancy, on a CF mom site would likely not be valid for you...
I hope you get what you want! Love, STeve
