Recent content by cftransplant

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    Moving Temporarily for a Transplant

    I moved 2,450 miles with my wife and three German Sheps.(I do not abandon dogs). I left my house vacant, and my wife is a nurse and her company (traveler) paid the new rent for months. Moved with very little. Moved home the day I could leave, about 10 months post TX. Stay during evaluation...
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    Need to learn more about End Stage CF (Supporting a Friend)

    Yes this is end stage CF. Been there, done that. How many TX centers did he try and get listed with? I was turned down by many centers because of an infection when I was end stage. I would not take one rejection as a get along with dying. This kid needs a very driven person if he can not...
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    M. Abscessus and Transplant

    I was told to drop dead at most of the major transplant centers in the US, a few out of country. Keep on going and do not take it as a personal insult, I sure as heck did not take offense. Only Duke and UNC were serious at the time, I had cepacia. I still have cepacia. I felt that the...
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    Air Ambulance/Jet to transplant center -- anyone done this?

    PT and pulmonary rehab in my mind are the same thing. Duke has the center for living (gym). The gym is not an option, pre and post TX. Post TX is at least 23 sessions, most are 3-4 hours a day. Some spend months in the gym. They feel you need to build yourself up for the TX and certainly...
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    Out of state transplants because of b. cepacia?

    Multidrug resistent Burkholderia Cepacia, may have changed over time (since 95), (currently multivorans not III). Been off walkabout for the past couple of days camping, for PT. CF TX 63 cepacia 14 years out
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    Air Ambulance/Jet to transplant center -- anyone done this?

    How does UPMC feel about this? Have you talked to UPMC about a "dry run"? I and others have had these. I know of a liver TX that flew for a while to a center, to head home without a TX. Airports and Airspace close at times. I had visits to the clinic prior to the TX. Even had a couple of days...
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    Out of state transplants because of b. cepacia?

    Hope you get your gift when needed. I was at Duke last week (routine checkup), they would likely TX me again. I had cepacia at the time of TX and still have cepacia. Talked to a recent TX CF in the hospital, amazed I was twice her age when I had my TX and am close to 3 times her age now. If...
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    Cleveland Clinic?

    Musclemania70 is correct. Check the waiting time at the centers you are considering. I chose a center based on this years ago, the second runner up would have had me wait much longer than I had to live. Pitt is reported to have a lot of crime in the area (a conversation a week ago). Years...
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    Duke was doing cepacia and I assume they still will look at cepacia's. Pit use to look at and take some cepacia's. Check both these centers. CF 63 TX cepacia and 14 years out
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    Celebrating 7 year Transplant anniversary!

    Congrats, many more of both anniversary dates for the TX and the wedding. Have not tried the kidney TX yet. Pamelajet: If an old guy can do a TX, your grandson will do fine. CF cepacia 63: 13 years out
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    Cleveland Clinic?

    I would likely go with the Cleveland Clinic, they are close to home and that would be a very large advantage. I checked their numbers, they look good and they certainly do enough to be a serious center. Questions I would ask both centers: 1) Do you re transplant? 2) What is your 5 year survival...
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    Ontario Trillium Drug Program

    Prograff (tacrolimus) Ask your TX coordinator (have your brother do this) on the med change. I was forced to change the mfg., as a result I had to check my blood level (trough) after 4-5 days. Each time they go with a new (cheaper drug/different company), I go in for a blood draw to check the...
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    Ontario Trillium Drug Program

    In the past my bill was $2,000 per month. With the generic, it is $1,616 for three months (obviously my dose, twice a day, total of 720 1mg caps). Perhaps the generic will be covered going forward. Hope this helps.
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    Ontario Trillium Drug Program

    Can't answer the question, but Tacrolimus in the states is declining in price with the generic drug companies. "Dr. Ready" from India makes the drug. I have been forced to use the drug from three importers due to the lower cost to the drug plans. Trillium may pick it up, as the drug cost is...
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    My husband just had a transplant...some of his nurses and his surgeon are saying...

    Thanks for the pomegranate info. Looked it up and the number of interactions is covered in the literature with some common drugs used post TX. Glade to learn of another potential juice issue. CF TX 63 cepacia 13 years out