Kathy Legere
Forum Replies Created
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My husband died two weeks ago of Covid/IPF. We had been evaluated at Duke, Temple, NYULangone, Columbia, U of Pennsylvania and Montefiore.
May I give my opinion as a wife of an IPF sufferer and now a widow of this ugly disease? Please look up the best transplant centers and see what they say. I’ve read of patients in their 80’s who have gotten transplants. Age shouldn’t be a factor As for your weight the center will tell you if you need to lose weight and how much. Now with diet drugs it may not be as difficult to lose the weight.
My husband was rejected due to several physical problems with his heart and aorta. Discuss with the transplant centers’s social worker concerning having 2 people to help you.
Please try. If the centers say no then at least you have tried. I know we did as much as we could to receive a new lung but it was not to be. The end was difficult but my husband was surrounded by people who loved him only the transplant centers can tell you no transplant. Best of luck
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My husband has been diagnosed since 2016. If you have a lung transplant center near you please go and get evaluated for a transplant. My husband is now 75 and we have been turned down at 5 centers for a transplant. We are waiting to hear from Temple as they take more difficult cases. His age is a factor. I wish we had tried to get listed in the beginning but he felt fine and had no symptoms. Two years ago he took a big drop in his breathing. It can happen quickly and with no warning. IPF is such a crazy disease and you can never tell when this can happen. If he had been evaluated he might have been able to get a new lung when his health turned. It took us almost a year to be evaluated and by that time he was older and had some other health issues. Go sooner rather than later.
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My husband has been taking cinnamon capsules (CinSulin). I give him 2 capsules with his morning Ofev(150mg) and it seems to help.
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My husband is 75. We have been turned down by Duke and NYU Langone. We are currently trying to get listed at Temple and Columbia Presbyterian in NYC. We live in CT so Columbia would be our most convenient center. We went to Temple as they are supposed to tackle more difficult cases. We have friends that were turned down at 5 centers and was accepted at Pittsburg. Keep knocking on doors. Each center has its own criteria. I think the only body parts they haven’t looked at are his toenails!
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Hi Kim. You give me hope. My husband has had IPF since 2016 but took a real downturn a year ago. We have been turned down by Duke and NYU Langone but are hopeful at Temple and Columbia Presbyterian NYC. As we live in CT I’m hoping Columbia will be a yes. Your journey is so encouraging. Thank you!