Hey Matthew and welcome to Healingwell,
I've read on another forum, that CF is becoming a bit more known to cause heart problems now than it once was.
A theory used to be, that we actually had the healthiest hearts at one point, because once lung function declines, the heart has to take over a bit to make sure the body still gets enough oxygen. The thinking was all this effort, enlarged our hearts and made them stronger due to all the muscle work out.
I think they are now however beginning to wonder how much strain the heart can take from all the extra work it has to do to compensate for the lungs. I think as more CF patients are now reaching and getting over the adulthood hurdle by quite a way, they are beginning to see more things such as heart problems cropping up.
I would say for yourself, ok so you have been avoiding the hospital up until now like the plague (can't really blame you, they are horrible places), but I think you realise yourself that it can't carry on like that without problems. You do need the support of a familiar CF team, it can make the whole dealing with CF process a whole lot easier sometimes.
I would ask your doctors out straight, why they require you to see a cardiologist. Depending on the age of consent laws and everything where you live, and how old you are, I think changes how much they have to tell you. I think that as long as you are over the age of consent though, if you ask them something directly, they do have to explain to you. Seeing a cardiologist is a big thing, if there seems to be no apparent reason they want you to.
Oh, and I agree, even in the UK, childrens healthcare is SO much better than adultcare generally. Our adultcare system is getting better now, and things are changing rapidly, but yet it feels so slow though before they finally make something decent across the country, out of our little pokey CF units. Again, I think this is down to the whole adult thing (over here at least). It was a rush job to get enough adult centres up across the country, when they began to realise, there were now way more adults than they could really handle in the Childrens CF centre.
Hope tis helps some, and feel free to question anything I've said. Hope you enjoy your stay here.
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Vitamins A,D+E, Salbutamol, Paracetamol, Tramadol, Nefopam, Ursodeoxycholic Acid, Trazodone, Slow-Sodium, Azithromycin, Metachlopromide, Omeprazole, Tobi Ineb, Folic Acid. I use PEP device as my physio. Had a Port-a-cath fitted on chest wall since Nov 04
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.I'm from the UK!!!!! If anything I say makes no sense to you, let me know so I know how not to be so English.