I'm not very strong on this Topic.

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Alliexxoo
New Member


Date Joined Jun 2010
Total Posts : 2
   Posted 6/5/2010 3:24 PM (GMT -7)   
Hello, Healingwell members,

I'm new here, and I have recently found out my 1 month old cousin was diagnosed with Cystic Fibrosis. Now, I'm new to this disease, I've never herd of it before, so this disease is not my strong "health" topic. I've done quite the amount of research on Cystic Fibrosis. On the Canadian Cystic Fibrosis foundation's website, it states that there is no cure for Cystic Fibrosis, but although a double lung transplant would be the "best" cure, for the transplanted lungs does not create CF mucus. The topic that confuses me is many other articles state that Cystic Fibrosis paitents who've had a lung Transplant may still die due to complications related to Cystic Fibrosis. How can an individual die from Cystic Fibrosis if they've had a lung transplant? Isn't the mucus why the lungs become damaged, and if you have Cystic Fibrosis with transplanted lungs, those lungs wouldn't create the Cystic Fibrosis mucus? It does not make any sense to me what so ever. Can someone please explain?

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 6/6/2010 4:02 AM (GMT -7)   
Hey there,

It is very confusing, I get confused sometimes still and I've lived with it for 24 years!!

Yes, you are right, there is at present no cure for Cystic Fibrosis, they they are working hard to get one, it means basically changing the whole gene structure of your lungs and then also stopping it rejenerating those genes back in to CF ones.
CF effects almost everything, your lungs, liver, pancreas, van deferens and fallopian tubes. It is a faulty gene that screws up some doors that usually let chloride through. Because these doors don't work it means that mucus is thick and sticky clogging up everything that uses mucus. Very basic explanation there, about CF.

It's crazy that lung transplant is listed as a cure. It's not a cure, as it 1) doesn't fix all of the other problems associated with CF and 2) It is true transplanted lungs wont carry the CF gene, meaning they won't have the fault that causes all the sticky infection breeding ground. However, like the gene therapy issues they have had with rejeneration of bad genes. This happens after transplant too. Your genetic code is still there working away, meaning the transplanted lungs genes will eventually be replaced by your own.
Transplant is only given as a last hope measure, when your own lungs are so weak they can hardley support themseleves anymore.

I hope this helps, I probably haven't put things in the best way but I think I've covered everything almost. Any more questions, do ask.

All the best
Gem
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, DNase Ineb, Folic Acid, Adcal-D3. I use PEP and Flutter device as my physio as well as the occasional ABC when bored. 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.


Alliexxoo
New Member


Date Joined Jun 2010
Total Posts : 2
   Posted 6/6/2010 11:23 AM (GMT -7)   
She's a really healthy little girl, nothing to worry about yet.

So basically, your own Cystic Fibrosis cells will become apart of the transplanted lungs and those lungs will start making Cystic Fibrosis mucus. Does this happen with other genetic disease which required a transplanted organ? I never knew that, I knew people eventually rejected their transplanted organs because a Kidney only last 5-10 years. That's crazy!

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 6/6/2010 3:05 PM (GMT -7)   
Yeah it is all a little crazy huh?
 
I'm not so sure about other genetic diseases, I'd guess so. Especially the liver as that is faster to rejenerate than lung tissue. I think the lungs is still a slow process as once the CF genes are back in place, things will be different the second time around, as treatment is better, and you are more aware of infections, than you are in childhood. We all used to play together as kids, there were no cross-infection rules, meaning mutations of infections were made that thrive only in CF lungs. The longer you can avoid CF infections, the longer it will be to have any significant lung damage.

The good thing is-when I was born, my life expectancy was 5, I beat that. I beat the 12 year mark and the 21 year mark. I'm due to beat the 25 year mark in February. Up until a couple of years ago, the expectancy was 31, now it's 40 I think!! This is good news though, as it means by the time your little cousin reaches my age, life expectancy is probably going to be normal-at least 60! Even without a cure coming a long, this is where we are headed. Treatment is a lot better now than what it used to be. I think when I was diagnosed at 2, I'd just missed out on the previous dietry advice of eating nothing with fat in it, as enzymes weren't all that good.

Now treatment is there for mucus thinning, better antibiotics, enzymes. It's all just generally looking better all round. There is now Dornase Alfa, which is a nebuliser that breaks down certain DNA cells in the lungs which is what makes mucus about 10 x thicker for us. This is pretty new, and I'm sure people taking it before lung damage really is a problem, will help prevent infections in the younger generation.

I'm not saying there is nothing to worry about, I'm just saying there is now a lot less to worry about. Perhaps when your cousin gets to their 20's, which is usually when lung transplants are happening now, it might be that it isn't even thought about until a lot later on, as treatment is always advancing.


CF is still pretty young, in how long it's been known about, and even how recent the location of the genetic fault itself has been.

Gem


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, DNase Ineb, Folic Acid, Adcal-D3. I use PEP and Flutter device as my physio as well as the occasional ABC when bored. 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 (Gemsi) : 6/6/2010 4:11:26 PM (GMT-6)


KotaTWLOHA
New Member


Date Joined Aug 2010
Total Posts : 2
   Posted 8/26/2010 5:58 PM (GMT -7)   
My sister was diagnosed with Cystic Fibrosis at 7 months. Let me start out by saying that in order for the child to get CF both parents have to carry the gene, and if BOTH parents carry the gene, there is a 1/4 chance of the kid getting it. Also, the lungs are not the only thing affected in CF, it can be the pancreas, the stomach too. But the lungs have a larger amount of mucus on them due to not producing any cilia. Cilia gets rid of mucus. Therefore, when a person has a double lung transplant the new lungs produce cilia, and it can get rid of the mucus on the lungs.

My older sister was 22,(the average life span of a person infected with CF is 40, if they are lucky.)
She had a double lung transplant on October 16th, and passed away on April 17th. She passed away because her lungs rejected and didn't work.

midge-lea
New Member


Date Joined Aug 2010
Total Posts : 13
   Posted 3/12/2011 6:24 PM (GMT -7)   
thats awful im sorry to hear that, just when you think things could start looking up. i have CF and was diagnosed at 6 weeks old im now 21, i havent had any transplants and am not on the list as of yet, i have quite alot of infections but my main issue is my stomach, my bowels and pancreas are really rubbish, and i suffer really bad with acid and am awating confermation of weather i need a laprascopic fundoplication operation. anyway i hope you are managing ok i pass my regards to your family
xxx
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