I have a question google is not answering

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gamepromatty
New Member


Date Joined Apr 2010
Total Posts : 6
   Posted 4/7/2010 8:19 PM (GMT -7)   
I'm new here, so hi everyone!

Since I've moved out into my own appartment while attending collage, i've generally been avoiding CF regular check ups. Lately they've been wanting me to see a cardiologist and sending referals. While the doctors not explaining why (childen's health care is way better) they've been sending referals for me to see a cardiologist. Really worrying me with my lack of details. I've ignored every doctors appoitment for the past 7 months, and boy, so I feel like dirt.

I know thy Cystic Fibrosis is a multiorgan disease which generally takes a tole on pretty well the whole body. I was wondering if anyone knew if there was a certan risk or effects CF puts on the heart? Any answers will be greatly appresshated.


Matthew

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 4/8/2010 2:06 AM (GMT -7)   
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.
Gem
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
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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.


gamepromatty
New Member


Date Joined Apr 2010
Total Posts : 6
   Posted 4/8/2010 10:31 AM (GMT -7)   
I actually thought myself that us Cystic Fibrosis suffers had extremly healthy hearts also. Although I always suffered somewhat from hypotension. Wouldn't a stifening of the artries caused hypertension? I'm not to frimilar with any Cardiovascular system information. Cody99 and/Darkies Gem if it's not to much to ask, could you please explain a little more in detail? What are symptoms of Heart problems related to Cystic Fibrosis. Cody99, I would also like to hear more of your symptoms, what you're suffering from, and just your expirence in general (if that's not to much to ask). I'd like to compare my symptoms with yours.


Thank you! Matthew

gamepromatty
New Member


Date Joined Apr 2010
Total Posts : 6
   Posted 4/9/2010 3:05 AM (GMT -7)   
Cody99,

My symptoms do not seam that serious. I think maybe it's okay for me to blow off the cardiologist thing. Maybe if I were feeling worse, but thanks for the information!


Matthew

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 4/9/2010 3:55 AM (GMT -7)   
I agree with Cody in that this is completely your choice to make.

Though I'm confused as to why you are so against going to see the cardiologist? I'm just thinking of ways they could maybe think you have a cardio problem. Could it be to do with your blood pressure or pulse? Maybe an ultrasound as they do sometimes have a glance at the heart, or an xray. Maybe listening to your chest with a stethoscope they've heard something? Perhaps infection frequency, or lung function decline. Could be many things. Might not even be CF related, which is why they want you to see a cardiologist as its out of their specialist area. Heart murmours seem to be somehting commonish with CF, I've heard of a few people having them, most heal quite easily and quickly on there own.

It might be something really small that just needs to be kept an eye on. It could be something bigger, that you need tablets to keep it under control. I don't think they will be wanting you to go to a cardio, just for the sake of it. It could be for a reason to prevent future problems.

 

For me, the risks of what it could be, would be well worth it. But then I do lean towards overcautious always. I'd probably need to go, to stop myself panicking about what could be. I think a good first step though, is asking your CF team, why they want you to see a cardiologist. What have they spotted that you can't feel.


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
Help support the forums so we can support you:  http://www.healingwell.com/donate
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.

Post Edited (Darkies Gem) : 4/9/2010 4:59:06 AM (GMT-6)


gamepromatty
New Member


Date Joined Apr 2010
Total Posts : 6
   Posted 4/10/2010 12:44 PM (GMT -7)   
I have a check up sometime next week, I guess I'll ask then. Thanks.

Matthew
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