best cystic fibrosis lung transplant hospital?

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I had my lung transplant at Barnes-Jewish Hospital/Washington University in St. Louis, MO and have zero regrets or anything negative to say about the experience. Everyone from the docs to the nurses to the food service and cleaning employees were top notch. Although I was quite used to a medical routine, having followed one since early childhood, they made sure to thoroughly explain everything to me and by the time I left the hospital a week after the surgery I was completely at ease with my new medical routine. They were also great about including my family - husband and parents because they know those supporting the patient are a vital part of the process too.

We currently live in Pennsylvania and I've been to HUP (Hospital at University of Penn) in Philadelphia for a couple of check ups and was not at all impressed. If I had an emergency I would NOT allow myself to be taken there for anything. I return to St. Louis for check-ups even though it's several hundred miles away. Enough said?

I would also avoid having it in Houston. We lived there up until relocating to St. Louis for my transplant. I considered transferring my listing from Barnes to Houston so that we wouldn't have to relocate, leave our home, etc. Before I made my decision my insurance company called me and said that I could transfer my listing if I wanted to, but they would treat it as out of network, meaning they would pay nothing on it, if I did. Note that the hospital and transplant docs were listed as in-network in my insurance program but there results were so poor that they couldn't support it. Obviously my decision was easy to make after that.

I've heard that Chapel Hill, NC is also an excellent transplant center if you're located toward the east coast.

Bottom line you have to consider your situation and you have to be completely comfortable with your transplant team. If you visit a center and it just doesn't feel right then you need to go elsewhere. Transplant is a team effort between you and your transplant team - for the rest of your life.

Best wishes.  (+ info)

Can i donate part of my lung to a friend?

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I met this girl in my english class and she says she has cystic fibrosis and may need a lung transplant soon, would it be possible for me to donate part of my lung and give it to her, And obviously i know about rejection and blood type this question is regarding the legality of the situation not the medical terms.
The only organs you can safely donate while alive are the liver (as it regenerates itself) and a kidney without having any real limitations. By only having one lung, each of you would face serious complications.

Even if it were possible, organ donations aren't legal if there is serious risk of harm to one of the patients--as well, if you're a minor, your parents have to consent and you have to go through a battery of physical and psychological testing.

The best bet for these transplants are organs from deceased donors who are around the same size as your friend--and blood type, as you already know.

Because of your involvement with organ donation already, I definitely suggest carrying an organ donor card and discussing your wishes with your family in case something were to happen to you.


Sorry if this is more detail than you wanted, and I hope your friend gets her transplant!  (+ info)

WHAT is the MOST YEARS DRS GIVEN after LUNG TRANSPLANT to most middle age CYSTIC FIBROSIS????

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I am not too sure, but I pray to God it is a long time.

My sister has CF, and she is turning 44 on May 10th. Thank goodness St. Mike's hospital in Toronto keeps a close eye on her.

When it comes time, I will be the first person to step up to do a live doner to give her a lobe. I would rather live the rest of my life without a lobe, than the rest of my life without my sister.

Good luck to you.  (+ info)

I have symptons of Cystic Fibrosis. Is it possible to start show the symptons in my 30's?

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I am having a hard time breathing and seem to have attacks that come on all of a sudden. Also I t feels like something stuck in my lungs..I cannot remeber any signs when I was growing up. Is it possible to start showing signs of cystic fibrosis in my 30's?
Yes, it is possible. Some of the previous answers are unbelieveable.
No, you don't have to be diagnosed prior to 2 years old and NO you don't have to spend your teenager years in the hospital. Some of you are reading out of a 1950's medical journal.
There are many different mutations with different manifestations.
There are MANY different forms of CF and there are documented cases of people being diagnosed in their 30's, 40's, 50's , 60's etc...
Good Look and I hope you find what is ailing you.  (+ info)

What sports/physical activities are good for someone with Cystic Fibrosis?

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I want to get my daughter involved in some good sports/physical activities. She's only 3 years old. She has Cystic Fibrosis. We live in New York and walk a lot, she gets out of breath often when we go for walks and walk up hills. But the doctors say its good for her to have to work her lungs. What are the best sports and other physical activities I should get her involved in?
Regular exercise improves the health of people who have cystic fibrosis. Exercise helps loosen mucus, encourages coughing, improves oxygen flow, and makes you feel better. Upper body exercises, such as swimming or rowing, increase the strength and endurance of the muscles that are used for breathing.

After talking to your doctor about how much exercise is good for your child, encourage your child to participate in sports and recreational activities. Team sports are great ways for your child to stay fit and to interact with other children. Talk to the coach or supervisor about your child's abilities and the important role of physical activity in the treatment of cystic fibrosis.

Some people who have cystic fibrosis may not be strong enough to participate in certain activities. Your doctor can recommend the right amount and type of exercise for you. Or, you may work with a physical therapist to develop your own exercise routine.  (+ info)

What are the symptoms of cystic fibrosis?

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I know that it affects the lungs, but what is cystic fibrosis exactly?
It's a defect in the CFTR that affects Chloride and Salt transport, It's amp related and genetic, each parent can have different mutations and child will have severity of the genetic mutation.
Screening tests are to be done on all newborns, the clue is if you culture Pseudomonas bacteria even if not diagnosed. Sweat tests and common screening panels are done, but there are over 1600 mutations and not all cause disease. The stickiness of the mucus from excess salt causes Pseudomonas bacteria to have an affinity for the lung regions, but the pancreas and GI tract, sinuses/polyps and other anomolies can occur along with diabetes, CFRD and malabsorption sydromes. Life span is limited with/without treatment. Eventually, from the repeated infections, scarring/cysts/pus/bleeding your breathe is taken away and you die from elevated levels of retained Ccarbon monoxide if your kidneys aren't blown out from the repeated IV meds that affect renal tissue and hearing. go to www.cfww.org search under what we do, who we are, contact us, see lower R page, community links, Help Karina, I'm helping her come to the US as I have the same disease and no longer work. go to www.cfww.org , www.cff.org and www.medicalnewstoday.com- search diseases Cystic Fibrosis, the most recent one by J. Nick is about the most accurate he's written yet, CF is CF no matter what mutation you have, it's just as severe, I have pancreatic competency, so, I'm not as bad as others, but it's a cruel disease. Hope this helps.  (+ info)

How do chloride ions affect water transport and mucus buildup in cystic fibrosis?

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In the disease cystic fibrosis there is a defect in the ability of endothelial cells to transport Cl- ions. What rationale would this have on water balance and possible regulation of mucus build up in the lungs? Since this defect is in a gene for all cells would other tissues besides the lungs be influence, if so, which ones and why? Besides gene therapy, what pharmacological treatments are beneficial and why for treating the Cl- ion imbalance?
Osmosis baby.

For the rest, read your damn notes or textbook. This is not a cheating service.  (+ info)

how long can someone with cystic fibrosis expect to live for?

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im asking about a friend who is now 37 years old and it was recommended for him to have a lung transplant 4 years ago which he hasnt had yet.
Today, the average life span for people with CF who live to adulthood is approximately 35 years, so your friend has done well so far.  (+ info)

Do you have Cystic Fibrosis and what do you use to expel mucus from lungs?

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Do you have Cystic Fibrosis and what do you use to expel mucus from lungs?

I have nephew 2 years old nephew just recently diagnosed with CF. doctor will not prescribe Pulmozyme saying that he is too young. What other choices we have besides chest therapies. We are using the VEST but the mucus is not being expelled.
That vest is garbage in my opinion. Perform CPT (chest physiotherapy) on your own. Do a web search for chest physiotherapy and start to practice. Ask his doc to order CPT and have it taught to the family. Basically, you cup your hands, position him in various drainage postitions, and pat above the area that has secretions. Positioning for drainage is key. The machines sure save time, but real CPT done with the human hand can not be beat. If the doc won't order CPT call the local hospital and ask if someone from the Respiratory department can assist you in learning CPT.

He probably is too young for Pulmozyme, but not bronchodilators and steroids. I hope he is taking some of those just to make thing easier for him. CF is tough, but every year they seem to live just a bit longer. Aggressively stay with the CPT as it really does help.

CPT is huge for CF patients when clearing secretions from the lungs. You could ask about mucomyst, but he is probably too little for that as well. Expectorants (cough syrups) can assist with his cough and other devices, such as Ultrasonic Nebulizers, can deliver a hypotonic aerosol to his airways that can break up dried secretions and make them easier to expel from the body. CPT + meds + aeorsol therapy (ultrasonic nebulizer is best in my opinion) + dedication will really help out at his age. Good luck.  (+ info)

Can cystic fibrosis damage the brain during embryotic development?

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I know that Cystic Fibrosis is a chronic disease of the lungs and digestive system that causes the body to produce mucus. . . But, can cystic fibrosis damage the brain during embryotic development? I thought it could because the mucus build-up could block oxygen from reaching the brain, causing damage and poor development. . .
Please include a source. . .
no not at all  (+ info)

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