Maghook

I'm 24 and also have CF. Currently, the longest known living person with CF is in their early 50s (well, that might just be the longest living patient at my hospital, pretty sure there are older CFers out there). With the recent developments of treatment for certain gene types, hopefully CF won't be such an issue in the near future for many people. I'd also be happy to answer any questions. I will also go through and add to questions that may have not been fully answered by kirra5152.

If anyone's interested you should come join us over at /r/CysticFibrosis where I help moderate. We do weekly check ups and try to inform and help others affected by CF.

Edit: Thanks for the Reddit Gold, whoever you are!

It's true that it's recommended for people with CF to keep their distance from others who also have CF but after transplant it's usually safe to mingle so long as there are no other issues.

Considering that these people have both had a bilateral lung transplant, the DNA of their new lungs no longer has the CF gene, so they shouldn't be able to cross-contaminate each other with the typical types of bugs you'd expect to find there.

Source: CF patient with a bilateral lung transplant.

I'm not sure if you're aware of this, but most people with CF have large lungs because of the way they've accommodated due to the illness and low oxygen saturation, causing them to lengthen in the chest cavity, this may cause problems when it comes to lung transplantation as the replacement lungs need to be the same size. Ask your doctors about it when you next see them. If you've ever had a chest x-ray and they've needed to readjust the machine, it's because they didn't account for the length.

Look after yourself. Your story is very common in the CF community. I was like you and once I left school and hit my 20s, my lung function started plummeting. I didn't take care of myself as much as I should have.

Are people with CF on immune suppressants?

Not as far as I know. These only come into play after transplant to prevent rejection, so I'll be on immunosuppressants for the rest of my life. Unless technology to grow my own organs makes some crazy advancements, in which case I assume I'd be living a relatively normal life without many drugs.

Which bugs and why?

Pseudomonas and cepacia are the two most common types of bacterial infections that can develop in the lungs, there are others but I've only ever grown pseudomonas. I think they're strains of pneumonia, so the fact that people with CF produce sticky and thick mucus provides an excellent breeding ground for these kind of bugs, as it's very difficult to clear the airways.

Now that I'm post-transplant my pseudomonas has been eradicated. I'm sure there's a chance I can be predisposed to infection due to have a suppressed immune system but it's not as likely, since my new lungs are much more effective at keeping clear than my old ones.

Because of the way CF works it's difficult for both men and women to conceive. Around 96% of men are infertile, but not sterile, as they are missing the vas deferens that carry the semen. CF thickens the mucus in the body, this means that a woman's ovaries may become clogged, making it harder to allow the egg to pass through its fallopian tubes. The main options for pregnancy are IVF or surrogacy. Though it is still possible for a woman to carry a child.